Monday, January 26, 2015

Little Update

Watch out, world -
I have energy again! 
Energy like I did before I got sick.
Today I went out and walked two miles,
And didn't even need a nap at the end.
(That doesn't sound big, but it is.)

If I feel this way tomorrow, I'll celebrate.
(and finish a few more projects)
If I don't,
I'll be grateful for a tender mercy -
A reminder from a loving Father
Of what I'll be able to do
When I beat cancer.

(And to all my Boston friends, 
stay warm during this blizzard.
I miss you... but not your snow.)

Wednesday, January 21, 2015

Sharing What I'm Learning

I am learning all kinds of things. Not the least of which is that every day is a new adventure/experience/challenge (depending on which day it is).

This first week post-chemo had ups and downs. Every person's body responds differently to chemo, so despite many kind people giving me a general idea of what to expect, I didn't really know how I would respond until it happened.

I am a science nerd, so I manage unknowns by taking lots of notes. I also am learning that I cope with my cancer by doing online research and writing down long lists of questions to ask my oncologist. For example, I went online today to learn the difference between the mechanisms of action for each of the types of anti-nausea drugs they give me. My list (even after I got that answer) has about 6 other questions on it. We'll see how he likes our discussion tomorrow. :-)

Here are some of my observations on side effects and other related stuff so far...

1. Happily, I have not experienced much nausea. The pre-chemo treatment included some really hefty anti-nausea drugs, which after my online research today, I better understand what they do and why they are long-acting. They have done a good job so far in preventing any nausea, other than a queasy stomach every few hours, which is a problem easily remedied by eating small snacks about that often (and which the nurses recommend doing anyway). One small victory!

2. Neulasta, which is an injection they gave me the day after chemo to help stimulate white blood cell growth in the bone marrow, takes a few days to give me the anticipated side effects. Side effects include bone pain (primarily an aching jaw, which left untreated, may make your head feel like it's going to explode). Fortunately, taking the recommended Aleve+Claritin combo makes it more tolerable. And after a few days, the majority of the pain dissipates.

3. There is a major lack of content on the internet regarding how fibromyalgia affects a person's response to chemo. I have had very mild, easily managed fibromyalgia for a number of years, with very few (but predictable, like when I do something I really shouldn't) flare-ups... but cancer treatments are adding a huge wrinkle to my fibromyalgia management. I'm not sure how "normal" I am, but my pain levels seem unusually high relative to what I've heard from others. I am still figuring out how to manage this. It's on my list of questions for tomorrow.

4. Prednisone makes me wacky, but I can tolerate it as long as it doesn't keep me from sleeping like it did last night. It was super crazy. The only way to describe it is that my thoughts were like little hyperactive mice skittering around my brain, running through the same maze-like pattern over and over. The result was light, recurring-dream-ish "sleep" that only earned me a 35% sleep quality rating on my phone's sleep analysis app last night. Ick. Sometime early this morning, I finally managed to run a mental thought exercise that involved picking up each of the little hyperactive thought-mice by the tail and dropping them into a metal box and latching it closed. After that, I didn't have hyperactive thoughts anymore... but it was also morning. (Good thing I'm done taking the prednisone for a while.)

I debate with myself whether I should share the hard stuff. Part of me wants to portray only my optimism, so you can be confident with me that I am going to beat this cancer and go on to live a full and happy life. And I will. But there is also the part about how cancer is not easy. And sometimes it hurts. And it does weird things to your body (some of which, after the fact, can be entertaining if I can come up with the right words to describe the experience... see #4).  And since someone, someday, might benefit from knowing how I approached it and what I think about it, I am going to try sharing.

The fact is, everybody has hard stuff going on in their lives. But with faith and prayer and a good support network and by the grace of God, we get through the hard minutes. And because we do, we are better for it. Hard things also carve out extra space our hearts, giving us greater capacity for joy and peace. It's pretty amazing, really.

Thank you to all those who love, serve, pray, and give in so many little ways. It is making a big difference.

Sunday, January 18, 2015

The Diagnosis Process

This is all old news. But it might be interesting to some.

As I mentioned before, we found the cancer because I contracted pneumonia. It started as a typical cold, but turned into a cough pretty quickly. I didn't think too much of it at first, because I had been visiting family, and my sister-in-law reported that it had taken a few weeks for some of her kids to get over something similar before I arrived. Then, like a good educated healthcare consumer, I looked online and read a bunch of websites that said if you go to the doctor before you've had a cough for five weeks, they will just send you home again anyway.

At about six weeks of persistent cough, with some days getting better and other days getting worse, I had a series of getting worse days all in a row. So I ended up in urgent care on a Saturday morning getting a chest X-ray. Something about the image didn't look right to the nurse, so she sent it on to the radiologist, and sent me home with a hefty dose of antibiotics for the pneumonia with instructions to rest for the next 3-6 weeks.

That night I received a phone call from urgent care, wherein they told me the radiologist felt I needed a CT scan ASAP. So the following Tuesday, I went to an imaging center for a contrast CT scan. Tuesday afternoon, I had another call from urgent care - could I come in to review the results, and by the way, I probably wanted to bring someone with me. All this checking and re-checking had been concerning up to that point, but this minute was the first that it really started to sink in that something might be more than a little wrong.

Our meeting with the urgent care nurse was sweet. She conveyed the news - the CT scan showed a "very large" mass in the anterior mediastinum, the space in the chest between the lungs and the rib cage, just to the right of my sternum. In this case, very large was about 10 cm x 7 cm, or about the size of my fist. The radiologist suspected the mass was a lymphoma, and the recommendation was that I find an oncologist to fully diagnose the problem. When we finished our conversation, that wonderful nurse hugged me, prayed for me, and asked me to keep her updated on how things went for me. She is a lovely woman.

Fast forward a week; next I met with an oncologist and his PA, both of whom are used to seeing people like me all the time. They ordered a battery of tests to further identify what we are dealing with: blood work, a PET scan, and a consult with a surgeon to determine the best way to obtain a biopsy.

Aside from the actual injection (I don't do needles well...), the PET scan was an interesting experience. They inject you with radioactive sugar, then have you lie down and not move for an hour or so while your body processes it. The idea is that cells that are active use more sugar (energy) than cells that aren't, so cancer cells (which are really active) will take up lots of the radioactive sugar, allowing you to image exactly where the cancer is located in your body. When the resting period is over, they put you in a PET/CT scanner and it uses cool physics principles to create a 3D image of your body that also shows where the radioactivity is most prominent. Once I had a copy of the scan in my hands, the biology nerd in me spent about two hours going over it, trying to determine what it all meant. Of course, it made a lot more sense after I went over it with my doctors. But it was still neat.

(Side note to anyone who has major health issues: always ask for a copy of scans and tests and other records for your personal files. They are about you, so they are yours. It makes seeing new doctors, switching doctors, and keeping track of your health record a whole ton easier than it would be if you had to chase down the records after the fact from each of the many places you will end up going.)

Getting a biopsy was the next major hurdle. Lymphomas are tricky to diagnose without a good-sized piece of tissue, I think because there are so many subtypes of lymphoma that you have to do a lot of tests to ensure the pathology is correct. With many cancers, getting a little sample via a CT-guided biopsy is sufficient. In my case, they recommended a minor surgical procedure instead, partly because the tumor is so closely packed in with vital organs (heart, lungs, major veins/arteries), and partly to get a large enough tissue sample to get good pathology. Fortunately for me, I was referred to one of the best doctors in the area for the surgery, and he really knows his stuff. So on the day after Christmas, I checked in to the hospital. The procedure is called a VATS (video-assisted thorascopic surgery) procedure - they make three small incisions in your side and, using a video camera to see what's going on inside your body, they deflate the lung and use the space that creates to get to the tumor and take a piece for pathology. While I was under general anesthesia, the surgeon also put in a port-a-cath so they could do chemo infusions more easily. (And I am REALLY glad. It makes it way easier.)

The first 24 hours after surgery were challenging, but I had good people taking care of me. My favorite was my nighttime CNA - he was optimistic, friendly, compassionate, caring, and just plain good at what he did. He made the time in the hospital a little easier to manage.

It took two weeks to get the pathology back, because after they did all the tests, they sent it to be reviewed by a board of pathologists to confirm the diagnosis. It was an anxious two weeks. During that time, I also had a bone marrow biopsy and few other tests, mostly to confirm my body could handle the chemo. (The bone marrow biopsy, while not fun, was way easier than surgery. I suppose it's all a matter of perspective.)

Finally, 31 days after the first suspicion of lymphoma, I finally had a diagnosis - primary mediastinal B-cell lymphoma. It was a huge relief (and a little mind-blowing, truthfully). No more waiting two weeks in between appointments, and no more tests! We were moving on to treatment!

(And since I already told you about the first treatment, this ending feels sort of anticlimactic. And I'm too tired to think of something interesting that would change that, so there you go. The End.)

Friday, January 16, 2015

Cancer: The Day-to-Day Stuff

In other words, more sharing of my experience and less philosophical ramblings... maybe. :-)

Yesterday was my first day of chemo. I was excited. I know that sounds weird, but in my defense, it had been 37 days since I first learned I had lymphoma, so it was absolutely fabulous that we were finally doing something about it! (I'll probably tell that story later. We'll see.)

Primary mediastinal B-cell lymphoma is typically treated with one of two protocols: R-CHOP or Dose-Adjusted R-EPOCH. Basically, R-EPOCH is R-CHOP plus another drug (E), but it is administered in the hospital where they can actively adjust the dosage based on your blood cell counts. It requires a 4-5 day hospital stay every round of chemo because it is a more closely monitored and 4-day continuous administration. The advantage, though, is that you don't have to get radiation after chemo is finished. R-CHOP can be administered on an outpatient basis, but for bulky disease like mine (I have a large tumor as part of my lymphoma) they will do radiation after chemotherapy to minimize the risk of recurrence. The downside to radiation is that it has some long-term potential side effects, like increased risk of other cancers later on. But for the two protocols, five year survival rates are about the same, plus or minus 5%, and both are in the mid-80% to low 90% range. So - there's a good chance of winning either way.

I thought about it a lot, but ultimately decided to go with the R-CHOP protocol. Hospital stays are an immediate high-stress thing. Long-term risk of future cancer due to radiation exposure is a delayed high-stress possibility. For me, the decision came down to how much more stress I felt I could take on right now, and how quickly I wanted to get started on treatment.

For the other biology nerds like me out there (or if you just want to know what kind of drugs they are giving me)...

R = Rituxan, a monoclonal antibody that binds to a protein only expressed on B-cells, targeting them for immune response. When the immune system gets to them, they lyse (burst open) and die. This is the coolest part of the treatment, I think, because it is specifically targeted to B-cells, and doesn't affect other cells in the body like the other chemo drugs do. From what I understand, this drug has made the CHOP protocol significantly more effective in treating large B-cell lymphomas.

C = Cytoxan, which binds to DNA and inhibits replication, causing cell death.

H = Doxorubicin Hydrochloride, which does a whole bunch of things to cells, including sticking itself in between base pairs of DNA, preventing DNA replication and protein synthesis.

O = Oncovin, which interferes with cell division by stalling it in metaphase.

P = Prednisone, which stimulates apoptosis (programmed cell death) in tumor cell populations, among other things (including making me kinda loopy while I'm taking it).

The CHOP drugs all target rapidly replicating cells, which is why you see side effects like hair loss, nausea, loss of taste, "chemo brain" (forgetting things or slow thinking), etc. As a random side note, I find it interesting that none of the drugs contain the word "toxin", but some of them come close. :-) Coincidence? Maybe not...

As another random side note, some people have told me that one of the side effects of chemo is that it makes everything taste really salty, even if it isn't. Maybe that's because some of the drugs are synthesized and administered in the salt form; the body then breaks them down into the chemical structure they need to be effective.

End of biology discussion.

The first chemo treatment went much better than I expected. We arrived about 9 am. By 9:30 the nurse had connected the IV to my port - getting a port was a great decision, since it doesn't hurt at all to put the needle in (and thus I don't freak out, either!) - and by 10:15 or so we had started the infusions. We started with two anti-nausea drugs and some benadryl to counteract the expected reactions from the chemo drugs, and then moved on to the Rituxan infusion. The nurse also gave me some Tylenol (to manage any potential pain). The body is usually resistant to the initial dose of R, so they administered the infusion slowly and monitored me pretty closely for reactions. I did relatively well, and only had one minor reaction that was easily remedied with a little steroid infusion. After that it was smooth, albeit slow, sailing! Once we finished R (around 1:30), the nurse gave two more drugs as quick pushes, which are administered through a syringe hooked up to the IV; these only took a few minutes each. The last infusion took just over an hour. They pushed some saline through the port to ensure the chemo had made it into the bloodstream, added some heparin to keep the port from getting blocked by clots until next time, and I was done. (Yep. Eight new drugs in one day. A new record.) By that time it was about 3:20, and I was on my way home. The last part of the chemo (Prednisone) I take in pill form once a day on chemo day and four days following. 

"Chemotherapy" has always sounded like a hard thing to me, but in reality it was just a lot of sitting around reading a book or talking to people. I could get up and walk around, but I had to roll my IV pole along with me and maneuver around the furniture in the chemo room, which kind of put a damper on things. So much for getting any exercise during treatment! :-)

The hard part is the side effects... but so far, so good. I've been able to manage what I've had so far. My biggest challenge has actually been a stress headache (likely a result of the trauma of new things + new drugs + how they react in my body). I feel a little loopy sometimes (thanks to P) and tired other times, but I think if I pay close attention to my body and stay on top of things I will do pretty well. We will see what happens after the long-acting anti-nausea drugs they gave me before chemo wear off; then I will have to manage it with pills, which I have but don't know yet how they will work.

Prayers have helped tremendously. A big thank you to everyone who sent a thought to heaven for me yesterday. I honestly didn't expect to have so few issues with the first chemo administration, and I felt it was an answer to your prayers that it went so well. Your help makes a big difference.

So... we are 1/6 done with chemo - the next one is three weeks from yesterday - and the end is in sight! It's a little funny... ever since I learned I have cancer, I've had to learn to take things one day at a time, not commit to things because I don't know how I will feel or if I will be available (or at the doctor), and focus just on this minute or, if I'm doing well, today. But at the same time, I want to keep in remembrance that everything will turn out well and that this won't last forever. At work, I tell people one of my skills is that I can look at the big picture as well as the details and zoom in and out between the two with relative ease. It's a little harder when it's my own life, but I'm grateful I can practice that skill in this experience. I spend most of my time in the details (the minute-to-minute "how do I feel?") but every once in a while it is good to zoom out again and see how the Lord is working to make the long-term outcome a good one for me. Yay for that!

Feel free to ask questions in the comments if you want to know something specific and I will do my best to oblige with a good answer in another post.

Until next time...

Wednesday, January 14, 2015

Bearing Burdens

This year, I face a new adventure. I was just diagnosed with primary mediastinal B-cell lymphoma, a very treatable large B-cell type of non-Hodgkin lymphoma. We discovered the cancer after a persistent cough turned into pneumonia. It will likely be the only time in my life I was grateful to have contracted pneumonia. (Hopefully it also will be the only time I ever get pneumonia. It's not very fun.)

Lest telling you this makes you promptly freak out so much that you stop reading and pick up the phone to text me, you should also know this: I believe this is part of the plan my Heavenly Father has for me. I have had spiritual impressions and experiences that let me know I can trust Him to be by my side during this challenge. While it will not be easy, I have confidence it will all turn out well in the end. There will be lots of opportunities to learn new things - both nerdy science things that satisfy the biologist in me and beautiful spiritual things that help refine my character and teach me to be more like my Father - and there will be lots of opportunities to be served, which (let's be honest about it) is something my independent self will probably benefit from.

OK. Now you can text me. Then keep reading.

Of course, being told you have cancer is not an easy thing. As I've considered my experience and talked with friends, I have settled on the following imagery to try to describe it.

Picture this...

You and everyone you know (and a lot more people you don't) are all walking along the path of life. Sometimes we make choices that are the equivalent of picking up stones and putting them in our pockets, and we carry around the burdens/consequences of those choices for a while. Sometimes God hands us a stone and suggests we carry it for a while, so we put it in our pockets and keep moving forward. Sometimes a friend hands us one of his stones and asks us to carry it for him for a while, and we do. Sometimes we see a friend as we're walking along the path, and the stones appear to be spilling out of her pockets and her hands, so we volunteer to take a few of her stones for a while. In each of the last three cases, it's a little bit of extra weight, but we take it anyway, because we love the person who gave us the stones.

Then there are times when something big and hard comes along - the death of a loved one, a chronic illness, a really hard educational program, an unhealthy or failed relationship, a cancer diagnosis. It's not like the other stones. It's like being handed a 200 pound boulder. "This is your new best friend." What was the first thing I did? I stopped and put the boulder down. It was too heavy to carry, so down it went, right where I was, and then I sat down to figure out what to do next.

Here comes the beautiful part. People who love me saw me sitting on that 200 pound boulder, and some of them stopped walking and turned back and sat on it with me. Some let me talk as I processed what I was being asked to carry. Some just put an arm around me and sat. And then as each one got up to move on, they volunteered to take a little piece of my boulder with them in their pockets. "I'll pray for you," they said, or "Here's a bowl of soup." Each time that happened, I chipped off a piece and handed it to them, and they continued their respective journeys.

Now for the other beautiful part. Jesus said,

Come unto me, 
all ye that labor and are heavy laden, 
and I will give you rest.
Take my yoke upon you, and learn of me; 
for I am meek and lowly in heart: 
and ye shall find rest unto your souls.
For my yoke is easy, 
and my burden is light.

When I seek His help, He gets out the yoke and puts it on both of us. Then, together, we can drag that boulder along and keep walking. The weight isn't too heavy after all, because I have joined forces with an infinitely compassionate and powerful being. His grace gives me strength to pull that boulder along as I continue to move forward. And after a while, I start feeling strong enough that I can even put little pieces of other people's stones back into my pockets, helping them, praying for them, being a good friend.

As I think about what it means to help bear one another's burdens, and to mourn with those that mourn, this imagery is what keeps coming back to me. We keep the covenant we have made with God to always remember Him by remembering His children and helping them carry their stones along the path of life.

For me, having cancer is a beautiful opportunity to grow and share and become better than I was. One very important thing I have learned so far is that a little bit each by a lot of people makes a huge difference. From coast to coast, I have a network of loved ones praying for me. Those prayers give me strength - especially during particularly difficult minutes, like during my bone marrow biopsy, or when I wake up at two in the morning and can't go back to sleep, or on a tired day when I don't know if I can sit up long enough to make it through another doctor visit.

I say unto you, that by small and simple things 
are great things brought to pass...

Although it doesn't seem like much from one person's perspective, the combined faith of all my friends and family has resulted in the activation of grace in my life, and we have seen miracles. 

I believe in miracles.