Thursday, September 24, 2015

Random Thoughts for a Thursday

I spent my evening with people I love in a place that feels like home. Except for the parts that have changed since I left. It was nothing big; a table gone here, turn left instead of right there, some different faces in familiar spaces... but it was just enough to remind me that I am not just Boston anymore. I am Boston-in-Salt-Lake now. And that is an OK thing to be.

My hair is growing. I had my first haircut about 2 weeks ago. My stylist didn't cut much off, but she did start shaping it so it looks more intentional. It is fun to have hair again. I like it. Except that it is long enough that I get awesome bedhead now. So I actually have to style it. (Or at least get it wet and calm the sticking-up parts in the mornings...)

I am learning (still) that it will take a long time to fully recover from chemo/radiation/cancer. The good news is that I can still get pre-boarding status on an airplane without feeling guilty.

My latest adventure is that I have been going to physical therapy to resolve some muscle contracture I developed after radiation therapy. It is interesting. I never expected physical therapy to be hard, but it is. It doesn't feel hard when I'm doing it, but when I'm done, I am the exhausted-and-then-some kind of tired. I haven't decided yet whether that's because it's PT (and it's supposed to be hard) or if it's because I have to add a 30-minute drive + 60 minutes of PT + another 30 minute drive + rush hour traffic to my day once a week. Both are entirely feasible reasons. At any rate, it appears to be helping, so I will keep it up.

And last but not least... My new house has furniture. Not a lot, but enough for now. I am having fun making plans for how to decorate/organize/paint and generally settle in. Lots of the projects I have in mind won't happen for a year or two or five, and that's just fine. I bought it knowing it would be a long-term project. The lack of blog posts can be conveniently blamed on the fact that I don't have internet set up yet either... It's weird to be disconnected at home, but not so weird that I'm willing to pay what they're asking for an internet connection. Yet. :-)

Sunday, August 23, 2015

News, Life, and More About Rocks


I closed on my new home a few days ago. Things I'm looking forward to:
- Moving out of a basement
- Windows and sunshine!
- Creating a beautiful, peaceful space
- Taming the rose bushes and raspberries
- Turning neglected areas into beautiful, attractive ones
- Covered parking
- Evenings on the patio
- Space and time to create


I've thought a lot recently about a conversation I had with a friend back in Arizona. She was diagnosed with a chronic condition while in her twenties. As we talked, she told me that she had to mourn the loss of her old self and accept herself as she now is before she could adequately cope with her diagnosis and move forward in life. I feel like I'm doing that, a little. I want to be back to "normal" (in quotes because I don't know that I ever will get there, or if I ever had it to begin with, for that matter), but the reality is that my body is still recovering from some significant trauma, and likely will be for a long time. So I need to be sad about what I've lost, and be grateful for what I've gained, and accept the new me and move forward. Some minutes, that's not hard. Other minutes, it is. But I'm learning.

Part of what this means for me is that some minutes I am excited about having a new home and the opportunity to to create a beautiful space. And other minutes, I am overwhelmed by all that I have to do to get there (partly because my brain still thinks I'm young and healthy and that I can do it all RIGHT NOW) in a 100-year-old home that hasn't been lived in for the better part of a year. It takes some persistent self talk to tell myself it's OK if the yard isn't perfect by next weekend. It's OK if the light fixtures are still dirty. It's OK if I have no furniture and probably won't for a month. There is time.

And More About Rocks:

We had a sacrament meeting talk today about Helaman 5:12, one of my go-to scriptures. You may remember my first cancer post was about rocks - rocks we carry as burdens. Today, we learned about the rock who is our foundation. I thought about how the Salt Lake Temple foundation is made up of giant, precisely cut slabs of rock. When we build on rocks, our world can shake, we can be pounded on from above and below, but we will hold firm. Somehow, yoking ourselves to Christ enables us to bear the rocks that come in the form of burdens, because our lives are built upon the rock of our Redeemer, the foundation upon which if we build, we cannot fall. We weren't placed on earth to have a relaxing and restful break from the growth and progression of eternity - this life is a test. Winds and waves and fiery darts and earthquakes and trials will come, but if our foundation is secure, so will we be. If we have the Spirit with us, we can take the offensive against the adversary and beat him at his own game. If we have faith and press forward with trust, even when we can't see how the Lord will keep the promises He has made to us, we will emerge victorious.

I sat through three hours of church today, wanting to feel connected, to share the feelings of my heart with a friend so I didn't feel alone. Finally, after the meetings, I asked a dear friend for a listening ear, and she gladly gave it. She doesn't have any answers for me, no magic words to solve my problems and heal my soul, but her willingness to listen helped me to feel connected and eased some of the loneliness I felt. It reminded me that I need to ask for help - not just hope someone sees that I need it and offers. It's a lesson I learned many times over the past few years, and apparently keep forgetting. So my goal this week is to ask - and let people serve me. I'm sure that will be easier than trying to do it all myself...

Wednesday, July 1, 2015

I'm Done!

Just over 200 days ago, I was working a shift at the Phoenix temple on a Friday night. As I began an assignment that would last about 2 hours, my father walked by and asked how I was doing. My answer was something like this: "I'm doing fine, except that I can't breathe." I spent a large part of the quiet observing time during that assignment trying to decide what the best strategy would be for an exit if I started coughing and couldn't stop or if I otherwise became unable to continue my responsibilities (slightly dramatic perhaps, but in retrospect, not entirely unreasonable, all things considered).

The next morning found me in Urgent Care getting the chest X-ray that led to a pneumonia diagnosis and found the lymphoma. Thus began the adventure.

Today, after multiple doctor visits, one surgery, one night in the hospital, six rounds of chemotherapy, more blood draws than I can count, and fifteen weekdays in a row of getting up earlier than usual and going to the doctor's office for radiation therapy, I am DONE.

I am cancer free!

I will likely carry a little tumor of scar tissue in the area where I used to have cancer, but as my radiation oncologist said to me yesterday, scars are just proof we're alive.

Walking out of the center this morning, I felt a funny mix of excitement, relief, joy, and sadness. I'm grateful to be healthy, to not have to go to the doctor every day, to go back to normal. But an important chapter of my life is ending. I met so many wonderful health care professionals who took good care of me. I met some really outstanding people, some of whom were fighting a similar battle with cancer, who encouraged me even in the midst of their own affliction. I made some wonderful new friends and renewed acquaintance with old friends, and all of you loved me and buoyed me up during tricky minutes.

This morning, the woman who gets her radiation just before I do (who I've seen on about 10 of the last 15 days but only just learned her name) congratulated me and wished me well. Then she said, in essence, "Don't take this wrong, but I hope I never see you again! And if I do, I hope it's on the street and not in the doctor's office!" She has blessed my life with her positive attitude and cheerful smile, even if our interactions only lasted a few seconds each day.

As I finish my adventure, I am again grateful for the experiences I had that prepared me for this. I think of a former colleague, who was diagnosed with aggressive end-stage lung cancer during the time we worked together. She lived only four months after she was diagnosed, but it was an instructive experience to observe her family as they gathered around her and coped with their impending loss. Father in Heaven taught me a lot from that experience. About a year after her passing, I was asked to be a visiting teaching companion to a beautiful woman who was battling a different form of terminal cancer. I remember praying for the capacity to fulfill such a daunting assignment, already feeling slightly overwhelmed with the other stresses of my life. But that experience was more of a blessing than a trial. We developed a close friendship, and I watched as this dear friend always looked outward despite being in constant pain, both seeking opportunity to serve and allowing herself to be served. I sat with her in the hospital room, sang to her in hospice, and decided that if I ever had to go through cancer, I wanted to do it the way she had: with grace, faith, and courage, always reaching out and looking forward. A year after her passing, I had the privilege of being in the temple with a handful of treasured friends as we participated in the ordinance that bound her to her parents for eternity. Those sacred moments were a far greater reward than I had ever anticipated receiving when I accepted the assignment to serve alongside her.

Now, as I embark on the next great adventure in my life (normalcy!), I hope that what I have done and shared reflects the grace I saw in my dear friend. I hope I've learned something worth keeping as a part of me for the rest of my life. And I hope that our loving Father has blessed those who have served me with as great rewards as He has given me.

Monday, June 15, 2015

Radiation and Back To Normal Life

I have been feeling guilty about the fact that I haven't posted in a while. At the beginning of this adventure, I determined I would NOT be one of those people who only posts until she gets better, and then you never hear anything more of it... and, well, it turns out that once you get better, life picks back up to its usual pace, and you don't have time to post as often as you used to when you were lying in bed all the time. :-)

Since my last update, I have:

- Had a PET scan that came back clean (yay!!!)
- Had a party to celebrate
- Moved to another state (but this one is where my job is, so that's a bonus)
- Had three visits with various oncologists (in two states)
- Found a place to live that does not involve relatives
- Started working with a realtor
- Worked every day in the office (yay!)
- Had my port removed
- Started radiation (I am currently 1/5 done) and
- Survived at least two micro burst storms, assuming I last until the current one is over

So... now for some interesting stuff you might care to read.

Port removal wasn't too bad. Except that conscious sedation doesn't really work for me unless they give me a real whammy of a dose. But once it kicked in, the procedure was basically pain free (yay!). So aside from being totally out of it and sleeping all afternoon, it went pretty well. Ten days later, I can shower without having to use Press & Seal over my bandage, because there is no more bandage (double yay!) and it looks to be healing nicely. A few more days and I'll be able to carry in the items I have stashed in my car that I drove up from Provo last weekend.

My radiation oncologist is really nice, and I like her a lot. She explained the whole radiation setup and treatment process to me, and I felt pretty good about what I heard - at least, it was consistent with what the first radiation oncologist (the one in Arizona I ended up not using because he moved to Scottsdale before I was ready for radiation :-(  - hence the move to another state between chemo and radiation) told me back in January. The same day, I was introduced to the radiation technicians, who set me up. Setting me up involved getting a CT scan, 4 tattoos (fortunately, they're just little blue dots, and three of them are in places most people will never see) to provide consistent alignment during the procedures, and a few pictures taken for my chart (so they can match every day's alignment up with the pictures) that I never want to see.

(Tangential side note - I've never been tempted to get a tattoo, but now that I have four, I am definitely opposed to it. I don't like the idea of voluntarily subjecting myself to that kind of pain. Come to think of it, I'm pretty sure that is why I don't have pierced ears, either.)

The radiation procedure is pretty simple. Walk in, gown up, wait to be called back. Each day, I verify my name and a picture of my face in the computer to make sure they are giving me the correct protocol. Then I record a pain scale rating and my initials in my paper chart to verify I was there. Then we go back into the radiation room. I lie down, face up, hands above my head, and they put a pillow under my knees and a band around my feet (presumably to keep me still; they do this during PET and CT scans, too). They align my tattoos with the red laser beams that are there for that purpose, and verify all the measurements. Then the techs go out, and the treatment begins - about 10 seconds of radiation from the 10-o'clock position, then about the same from the 2-o'clock position, and then a few seconds from somewhere below me (I found out this morning that the table I lie on is made of a web of carbon fiber or something like that, so the radiation goes through it without a problem). Then I'm done. The whole process (including changing back into normal clothes) takes about 20 minutes, tops. I get to do fifteen sessions - three of which are done already - and then my treatments are complete!

The purpose of the radiation is to ensure that there aren't any sneaky cancerous cells still alive in the middle of the bulky tumor I had in my mediastinum. It's more like an insurance policy against recurrence than a treatment to kill active cells. It does increase 5-year survival rates from 80-ish to 85 or 90-ish percent, though, so it's worth it. Especially since there are few if any immediate side effects. (Long term, it might increase my risk of cancer where the radiation went... but I decided that was better than the alternative treatment that involved 5 days out of every 21 in the hospital for chemo but no radiation.)

I feel blessed that I was given an early morning radiation time, so I can go before work and it doesn't interrupt my day (just my sleep... since I have to get up earlier than usual to make it on time).

I feel blessed that I feel lots more well than I have in a very long time. Energy levels are almost back to normal! (Being settled in a place I love - instead of a temporary rental until I find a place to buy - will probably help with that too.)

I feel blessed to be in a good neighborhood, with friendly people in my ward, and small and tender mercies that remind me that even in stressful or challenging times, my Father in Heaven is watching over me and sending little reminders that he loves me. They happen nearly every day. It's pretty awesome.

And that's about all I have to say, for now.

Friday, May 1, 2015

On Gratitude, and Chemo, Round 6

As I finish up Round 6 of chemo recovery (OK, I am really only 1/5 done with recovery, but whatever), I have been thinking today about all the things I'm grateful for. I feel like sharing.

* I am grateful I was guided to move to my parent's house before this adventure started.
* I am grateful I contracted pneumonia, since that was what got me to the doctor to find out about lymphoma.
* I am grateful I had lymphoma, which is a relatively easy cancer to treat (I've heard some stories from some amazing women about the brutal treatments they survived for other kinds of cancer).
* I am grateful I tolerated the treatments relatively well, and that I didn't end up in the hospital for some crazy complication.
* I am grateful I had 10 good days during every 21 day cycle.
* I am grateful that I gained the confidence to appear in public mostly-bald and that I (mostly) quit worrying what other people thought when they saw me.
* I am grateful for all the hats and scarves that were gifted to me that keep my head warm in over-air-conditioned buildings.
* I am grateful for the healing power of prayer, and for all the friends who prayed for me and supported me - from the nurse at Urgent Care when I was first diagnosed, to my high school biology teacher (whose influence, by the way, was the reason I studied biology in college), to friends from BYU and Boston, to friends (and even acquaintances) I met only a month before I was diagnosed, to my new co-workers who have known me for even less time, to my family... And this especially knowing that some of you prayed for me even while you were going through your own heart-wrenching challenges.
* I am grateful for the flowers friends and family sent me to bring my heart a little happiness.
* I am grateful for visits from friends on chemo days and days-after, and for the little gifts of encouragement that reminded me all would be well in the near future.
My Wall of Encouragement made my bedroom more cheery.
* I am grateful for protein shakes and protein bars and lemon ice cubes and the willpower to (mostly) avoid cookies and candy and sorbet during prednisone days.
* I am grateful for angel parents who support me emotionally and by making meals, taking me to doctor appointments, making sure I have what I need on bad days, and all the other little things that make a difference.
* I am grateful for a winter with no snow.
* I am grateful to live close to the Phoenix temple, and for all the fabulous people I've met there, and for the peace, healing, and revelation that come from being in a holy place.
* I am grateful that my hair is growing back (already! even though I had one more round of chemo two days after I noticed! Apparently my hair is as stubborn as I am and has decided that we're close enough to done, so it's time for things to get back to normal, by golly.)
* I am grateful to have been blessed with the gift of optimism.
* I am grateful for my work - because it's fun, because it reminds me that my Heavenly Father is watching over me, and because it distracts me from how I feel on the blah days.
* I am grateful for those who have called or texted or sent gifts of encouragement or asked me how I'm doing and really wanted to know.
* I am grateful for all the random things I've learned during this adventure, some of which are profound and some of which are silly, but all of which are now a part of me.
* I am grateful for the emails I get from my niece that make me laugh.
* I am grateful for the scriptures and the spiritual strength they have provided me.
* I am grateful for grace.
* I am grateful for a considerate benefits coordinator at my cancer center who, when she realized my benefits reset today, set me up with a totally legitimate and awesome perk that covered my deductible for the (otherwise expensive) white blood cell stimulation shot I needed.
* I am grateful I have good medical professionals to provide me with good medical care, and for the administrative staff who are always cheerful.
* I am grateful for my friends who take me on walks and listen to me talk.
* I am grateful for my friends and family who have offered me places to stay during my travels to Utah and to help with my upcoming move.
* I am grateful for miracles.
* I am grateful that even though I would normally feel lousy today, I am so happy to be on my last round of recovery that the happiness is masking some of the lousiness.

That's not all of it, but it's enough for now. :-)

I couldn't have done this alone, so thank you to anyone who played even a small part in my recovery. Seriously.

Saturday, April 11, 2015

Hair, Change, and Round 5

So, I've been thinking...

A few days ago, I looked at a picture of me from before I started chemo. That isn't really me, I thought. Why? I had hair.

A few weeks before chemo started, my friend gave me a pixie cut.

I lost my hair the second week after Round 1. For the first little while, pretty much every time I looked in the mirror without a scarf or hat on, I was startled by my appearance. Determined not to be beat by anything remotely related to cancer, though, I kept looking, and eventually I got used to the new way I look. It helped that it got too hot to wear a hat all the time, so it stopped being comfortable to hide beneath it. It also helped tremendously to have dear friends tell me I am beautiful even when I felt self-conscious about my appearance. Over time, I have adjusted to being mostly bald, and now I have a hard time imagining myself without it. It has become part of who I am.

This is sort of a parable for life, I think. Changes come. Some changes are subtle, and take a long time - like when you decide to grow your hair out from short to long. Others happen abruptly, like when you get a haircut or when chemo makes it all fall out. Some changes are good, some aren't so good; some are easy, some are hard.

Sometimes after the changes, we look at ourselves and are not quite used to what we have become. Maybe we wish things would go back to the way they were before. But as we persist in looking for the beauty in the change, we see the good that comes from it, and we eventually get used to the new version of the person we are.

My first successful selfie with head scarf.

Cancer treatments may have changed my hairstyle (or lack thereof!), but they have also changed me other ways. This experience has reinforced that people are more important than things. It has helped me to learn to receive encouragement and love - both from those I know and associate with regularly as well as strangers who approach me in the airport or the shopping mall. I am learning to become more empathetic. I am growing more confident in who I am, and in the plan my Heavenly Father has for me. It is teaching me how to be happy even during times I feel limited or inadequate because I can't do as much as I used to be able to do. And it is giving me great hope for the future.

Round 5 has been an adventure so far. Earlier this week, I was on a business trip to Cleveland. Lots of good was accomplished despite the fact that we adjusted to the 3-hour time change about the time we came home again. I have learned this before, but "tired" is not a good state to be in at the beginning of a new round of chemo. Thankfully, so far I am managing OK.

I'm grateful I have only one more round, because the smell of the chemo infusion room makes me feel sort of sick at this point. I had a little trouble during the actual infusion, but once I got home my stomach settled down again and things seemed better. So far, recovery is following the same predictable pattern it usually does, which I am hopeful will continue. The latest happy discovery in making chemo recovery better is that one ice cube of lemon juice per glass of water changes the taste of the water just enough that I can tolerate drinking it again. (I used to be able to drink Phoenix water straight from the tap. Chemo ended that a few rounds ago. Then last round, even bottled water started tasting bad. I'm so grateful it's citrus season and that we have a plethora of lemon juice ice cubes in the freezer!)

I have a long-time friend I knew in Boston who came on a 3-day visit to help me out this round, and it was a joy to have her here. She made all my meals, did all the dishes & most of my laundry, changed my bed sheets, and took me to my appointments. She also talked to me, fed me snacks, kept my water glass filled, and did everything else I needed to be comfortable during the first few recovery days. And the whole time, she claimed it was a vacation from her usual life! She is an angel, and it filled my soul to be with her again.

This morning we decided to go adventuring and headed north to a lake about 30 minutes from my house. We took pictures to prove we went. I may or may not have only lasted about 10 minutes out of the car at a time, but it was good to get out of the house and avoid going stir crazy for another day. :-)

Adventuring after Round 5. We had fun for a few minutes.

Special thanks to the wonderful women who drove me to and from the airport on either end of my friend's trip since my chemo drugs make it not a good idea to drive myself. I feel blessed to have such good people in my life.

My other dear friends from Boston sent me beautiful tulips yesterday just to say I love you, which brings a smile to my face every time I see them.

Thanks, CC & KB! They're gorgeous!

 Good friends and pretty flowers make me happy!

Sunday, March 29, 2015

Grace & Refinement

Have you ever had a day that goes like this?

Wake up.
Think about what you can expect from the day.
Wish it was bedtime already.
Get out of bed.

I had a day like that this week. It didn't look like it was going to be a very good one... I knew I would have my usual post-prednisone fibromyalgia pain for at least another 24 hours, and hadn't slept well the night before. So I prayed for grace and got up anyway. That morning, one of my best Boston friends sent me an encouraging text. Later another Boston friend and I had a text conversation that really cheered me up. At lunch time, a local friend and I went for a walk. By late afternoon, I realized that the day hadn't been so bad after all, and I felt grateful for inspired friends (thanks, CC, KB, and SR!).

Grace works. Because of the Atonement of Jesus Christ, every one of us, by virtue of our status as children of God, has access to a divine source of strength and help that can enable us to get through the tricky, seemingly impossible thing we have looming in front of us. For me, sometimes that thing is just getting through the next 5 minutes. But I am learning that if I pray for help to get through that 5 minutes, I can do it; then I discover I can do another hour or two, and (sometimes with the help of a few more prayers) pretty soon I have made it through the hardest part of the challenge, and things get better.

I saw an old friend in the temple yesterday and gave him an update on my life. When he heard I have cancer, he told me he was sorry I had to go through such a trial. I don't remember what I said in response, but I have been thinking about it a lot since: I'm not sorry for this trial... it's as much a blessing as it is a trial. Because of my experience with cancer, I am learning. I am having sacred experiences. I am closer to my God. And I am becoming so much more than I imagined I could be.

The refining trials of our lives change us. I don't think anyone can go through a challenge that takes them to their very limits and not come away changed. For me right now, it's lymphoma. I have met a lot of women, even strangers who approach me in the store, who tell me it's been breast cancer. But the trial you face could just as easily be anything else: infertility, wayward children, being single, a troubled marriage, chronic health problems, unemployment, the death of a loved one, not knowing what to believe in, the list goes on. The details don't matter. How you respond to it does. Let it take you to your knees (or if you can't kneel, then sit to pray), to your Father in Heaven. Let Him teach you about His Son, about grace, mercy, prayer, love, empathy, and compassion.

I don't know why I feel compelled to share these thoughts with you, but I know God wants me to do more than just tolerate cancer until it's gone and then move on. He wants me to share what I learn, and not just with my closest friends, either. It's true that writing is therapeutic, and it's also true that I write more on my blog than in my journal... but I'm pretty sure this is not just for me (if it were, it wouldn't be on a public forum). So I just trust Him and do it.

It's nearly Easter. What a great time to ponder His grace. #BecauseHeLives

Thursday, March 19, 2015

Chemo, Round 4

Sitting in the infusion room hooked up to chemo drug #2.

This time I had a nurse who asked me if I wanted the dose of Benadryl they give as a pre-chemo medication cut in half. I happily agreed, as my opinion is that this is one of the major contributors to the wonkiness I experience during and right after the chemo infusion. And it is making a big difference! The insta-headache I usually get was not nearly as intense, and my body feels generally less stressed. And since lowering the dose has no effect on my reactions to the Rituxin (which is why they give it to me in the first place) this is a happy thing all around.

Another happy thing is that in a few hours, I will be 2/3 done with chemo. Woohoo!

Random thoughts I want to share for the people who are looking at this because they were recently diagnosed with primary mediastinal B-cell lymphoma and want to know the things I wish I'd known when I started:

Even if the doctor tells you your disease is "aggressive", you always have time to find the right oncologist (at least, this is probably true if your diagnosis process is similar to mine and starts with symptoms that are not life-threatening ). My insurance covered a second opinion visit, so it wasn't too costly for me to try a few different providers. Find a doctor who will answer your questions at the level you want to be educated. Find one who will listen to you. Find one who works at a cancer center that will do all the things you need in one place.

What are "all the things you need", you ask? For me, they include blood draws, PET/CT scans, the outpatient chemo infusions, and radiation. I wish I had thought to ask if the cancer center could do blood draws on-site. Mine doesn't; instead I have to go to a freestanding lab or to the hospital if I want to get it drawn from my port (but I've already ranted about that). The more you can do in one place, the less stressful it will be in the long run.

It is also helpful to bring someone with you to the doctor visits and have a second (often less stressed) person listen to what the doctor says. That way you can have two sets of notes to refer to when you can't remember what he said. Write down all your questions (chemo brain makes it hard for me to remember mine in the moment without a reminder) and keep a list in between visits. And if you're like me, take notes on how you feel (daily is best), so you can ask about anything that seems consistently unusual.

Now for some fun stuff.

Epic Pi Day was awesome this year. It's a once-in-a-century experience. Pi day (for those who don't know) is celebrated on 3/14, in honor of the mathematical number pi (numeric value 3.1415926), which is important for all things circular. Which pie, conveniently, happens to be! Our party started on 3/14/15 at 9:26 am with a fun run of exactly 3.14 miles. I walked only part of it (so I wouldn't overdo it) with a friend and then came back to help manage the refreshments and take pictures. It was a blast, and the prizes were lots of fun too - a belt buckle with a pi symbol on it for the overall winner, a pie server for the top female finisher, little Hostess pies for the top kid finishers.

(Note. It is now 5 hours later and I'm home and just getting back to this.)

That evening we had the second half of our Pi day party, which included a dinner of pizza pies, chicken pot pies, dessert pies, and a few salads and stuff to round out the meal. YUM. Good food and good conversation all around. My favorite part of the weekend, though, was getting to see one of my best friends from Boston!

Did you know there are Pi day songs? Google it!

Oh! I was going to tell you all about my PET scan, too! If you read my Facebook post, you already know it looked good. I went for the PET a week ago. Knowing what to expect made it a little nicer this time around. I had the radioactive sugar injected through my port (yay! no needle stick to my poor worn-out veins!) and then hung out for an hour or so waiting for my body to process the sugar. After the actual scan, I asked the tech if I could get a copy of it, and she said if I waited 10 minutes she could do it right then. So I did - and while I waited, I met a woman who was accompanying her 101-year-old loved one to her 5-year follow up PET for her third or fourth bout with cancer (101 years old! I think she's a woman I could learn a lot from, and was kind of sad I didn't get to meet her.) and another woman who was on the home stretch of a months-long radiation regimen. Both stories were inspiring. The second woman shared how she is more compassionate, loving, and family-oriented now that she's experienced cancer. It is super cool to see how it changes hearts and lives.

The PET results show a significant decrease in the size of my tumor (yay!) and an even greater decrease in activity. I don't have specific numbers, but the report says "only slight residual [activity] present", which means the tumor is mostly dead (double yay!). To my untrained eye (because I love to look at all my scans, even if I'm not a radiologist), it looks like it's probably about 50-70% reduced in size. It will never go entirely away (some of it is scar tissue and has become a permanent part of me), but if we can ensure it's not just mostly dead but completely dead, I should be in good shape. (That's why I get to do radiation after chemo.) At this point, happily, things are progressing as expected and looking good.

I made it to the Salt Lake temple on Tuesday night for a little spiritual boost before chemo. I have had two weeks of church meetings in a row where the message has been "go to the temple", so I decided I needed to make it a higher priority on the weeks I feel well enough to go. On the way in, I met two young adults, former companions from when they were serving as sister missionaries in New Hampshire. One of them is getting married and moving to Boston soon. So fun to make New England connections with random strangers I met in a parking garage! I'm glad I went for more reasons than that, though. There is peace in the temple. There is healing. It gives me confidence and fills my soul. And the best part for me today? When we keep our covenants, our loving Father blesses us with greater capacity to get through the tricky minutes that are to come.

So... happy things in great abundance over the past few days! Yay!

2/3 done and grateful.

Sunday, March 8, 2015


We're halfway done, which means ... more scans!

The first one was called a MUGA scan. It's a cool idea, really. The doctor takes a little bit of your blood through an IV and mixes it with a radioactive substance that binds to your red blood cells. Then about 20 minutes later, he puts the blood back into your vein and takes pictures of your heart. The radioactive blood cells show him how well your heart is working.

Since one of the chemo drugs I get has the potential to damage the heart, they do this scan to make sure my heart is doing all right. Fortunately, it is.

I still don't like needles (and I like IVs even less) but I am getting better about not having too much anxiety about it. This time I had a great student doctor who was working with the nuclear medicine doctor; she talked and listened to me as much as I needed her to and that alleviated much of the anxiety. It worked well. I was glad she was there.

This week I have the next scan - a follow up PET scan. More radioactivity! This time I'm hoping we'll see a smaller and less actively dividing tumor. If we do, that means the chemo is working and I'm winning the battle. Although battle is such a funny word for it... I think of a battle as a highly active fight where I am using the strength of my arm and my healthy body's energy to defeat the enemy with a sword (or something). Battling cancer is mostly just a lot of getting really tired and feeling lousy after you get chemo. The chemo drugs do all the sword fighting. My job is to rest so I can survive despite the loss of the healthy cells that end up being chemo-casualties in the battle.

So... this is one of the only fights that I will win best if I sleep more and do less. :-)

Good night.

Sunday, March 1, 2015

Chemo, Round 3

I'll be honest. The novelty of all this cancer stuff has worn off. (duh) I don't want to say I spent time dreading round 3, but I couldn't think of a word that was more accurate. "Dreading" felt too strong, but "really not wanting to do it" was not quite concise enough. If you know the word in the middle of those two ideas that means what I'm trying to say, you'll be one up on me. This should be sufficient to explain how I felt, though.

It has been harder.
The adrenaline has worn off.
We're into the endurance phase of the treatments.
Every time I have a feeling-normal week, I have a harder time with going back to get more chemo.

Thanks to all the friends and family who responded to my FB plea for prayers on Thursday. They have made a huge difference so far this weekend, and have buoyed me up emotionally enough that I think I'll make it through another day. And then another. And pretty soon we'll be on the other end of this.

Now for the happy/interesting/distracting/fun stuff.

It's March! That means it's almost spring in Boston! Even though I don't live there anymore (and I'm really glad I left before this historically horrible winter), that makes me happy on behalf of all my friends who still live there who are learning about endurance with snow in a kind-of-sort-of similar way I'm learning about endurance with cancer.

March also means Pi Day! And this year, my friends, it's an EPIC Pi Day. 3.14.15. The party I'm going to will start at 9:26. And I'm excited.

After trying many different brands of protein shakes, I have finally settled on the one I like! First, though, allow me to explain why this matters - when I'm going through chemo, the treatments are really rough. Part of that is taking prednisone for five days every round, which does not do happy things to me. (Jittery weirdness. Enough said.) In addition, my body needs lots of protein anyway to rebuild all that gets broken. My friend told me last round that I might do better if I take my prednisone with protein instead of the carbs I normally eat for breakfast. But while meat is tasty, meat for every meal and snack? Not so much. Enter protein bars and protein shakes! My sister talked me through navigating the overwhelming complexity that is the protein bars & shakes aisle of Sprouts the other week, and after trying 5 or so varieties, I have found the one I like the best. So I am having a Plant Fusion chocolate protein shake with breakfast every morning I have prednisone this round, and it is making a very happy difference in my ability to tolerate the side effects of my chemo.

I am loving my job. It makes me feel good to have something to do, and the people I work with are equally awesome. I like being able to contribute to the good in the world. And I like that when I travel to Utah on the last three days before chemo, I feel almost normal enough that I can pretend nothing is wrong with me (except that I am wearing awesome head scarves to cover up the fact that I have almost no hair and I get tired a little - or maybe a lot - more easily).

I am also loving my friends here. Today when I got to church, I was already tired by the time I got into the chapel. (The first few days after chemo, my stamina lasts only about 15 minutes. Tops. Then it's time to recline or lie down. Sitting up straight for an hour through sacrament meeting is tricky, because it uses so much energy. So I do my best.) My friend came up and gave me a hug and told me how beautiful I looked. She is seriously one of my favorite people. She - along with many others here and elsewhere - can see beauty in my mostly-baldness, beauty when I'm exhausted, and beauty even when I'm barely holding it together. The encouragement gives me courage and strength.

The opening prayer in sacrament meeting today included a request that the Spirit would be there and that we would be filled. It was a wonderful meeting full of inspired men and women and children who testified of Jesus, His grace, His love, His priesthood power. And I was filled. I love it when Father answers prayers.

Friday, February 20, 2015

Random Thoughts for a Friday Night

I love serving. I especially love serving in the temple. Tonight as I worked, I felt loved. I felt peace. I felt my Heavenly Father teach me profound principles - about how much He loves His daughters, about how He answers prayers, about being an instrument in His hands to bless others. It was pretty neat. These kinds of experiences help me feel less self-conscious when I'm the only one wearing a head scarf. They help me forget I have cancer for a little while. (I like those minutes best.) And I am grateful.

I had my blood drawn again yesterday. I wanted to get my blood drawn through my port, since I really only have one good vein for drawing blood, and it has been poked lots of times in the past few months (and is consequently kind of painful when it gets poked again). Last time, they told me to go to the hospital instead of the freestanding lab and that they would be able to do it, but the doctor didn't write the exact thing on the order that told them to draw blood from the port, so they wouldn't do it. This time, I made sure to get the order exactly right, and after I got to the hospital and went through admitting, they told me there wasn't a nurse available who could do a port draw. And that they didn't know how long it would be until there was one... and then they told me I should have had them call for the nurse before I went through admitting. (Why doesn't admitting know this? Who knows.) The whole thing is silly... you can't make an appointment to get blood drawn, but if you want it drawn from the port, you need a specific kind of nurse. That nurse may or may not be available when you come, because there are only about 3 people on the shift who can do it, but they service the entire hospital. What do they think I'm going to do? Come and wait to see if the nurse is available and then go away again if not? Come and then hang out for hours until there's a nurse available? Nope on both counts. I'll just go back to getting blood drawn from the arm next time, and not at the hospital. It's easier to go to the freestanding lab. On the plus side, I'm getting better about not freaking out around needles - mostly because I'm getting lots of practice. :-)

The other good news is that my blood work still looks good (yay! mini-celebration!) and that means I don't have to worry and I can go do all the things I need/want to do next week before I have Round 3. And by the way, when Round 3 is done, I am HALF DONE with chemo! Then we can have another mini-celebration. Said celebration will likely involve chocolate.

But not applesauce - that tasted too much like metal last time I tried it (right after the first round). Happily, though, I haven't had too many problems with food tasting weird. I prefer simple and bland foods for the first 4-5 days after chemo - things like club crackers or wheat thins and lightly seasoned meats and plain yogurt - but that is less about my taste buds and more about how the spicy/acidic/sugary/fancy foods make my body react. Then, once I get through the first week, things go back to normal. Normal is good. Especially when it involves dark chocolate and lemon sorbet. (Just not at the same time.)

(Actually, maybe I should try that. It sounds kind of delicious.) :-)

Sunday, February 15, 2015

Sunday Meanderings

Did you know that if you mix a little soy milk (instead of regular milk) into your scrambled eggs - even original flavor soy milk - that it makes them taste weird?

For the record, I used to eat them this way regularly. People looked at me funny, but I was used to it and it didn't bother me. (People look at me funny when I put cinnamon in my scrambled eggs, too, but that just tastes like french toast batter without the toast!) After a while I stopped putting any kind of milk in my eggs and just scrambled them pure. The other day I thought I'd try soy milk again. They tasted weird. I don't recommend it.

That's probably the most entertaining thing I've learned recently. And it gives me a reason to laugh at myself.

Other interesting things I'm learning...

This week has been kind of tricky, because now that I have a job, I actually have to get up and going at the same time every morning. Getting back in to a routine is tricky even when you're healthy, but doing it during chemo recovery has presented a few extra tricky minutes. I have wanted to be well enough to work all day and still have energy to accomplish something after dinner, but what usually happens is that by dinner time, I'm pretty wiped out and really should either be sleeping or sitting in the recliner with my feet up. (This is not to say that I actually did that any night this week, but I should have. It turns out that pushing yourself to the outer limits of your physical capacity is also not the wisest way to try to counteract the potential insomnia associated with ending the prednisone cycle. But it was worth a try.)

Needless to say, I felt a little discouraged more than one night this week because I couldn't do all I wanted to. One particular evening, I knelt down to say my prayers, and what came out of my mouth was "I don't feel particularly grateful tonight. I feel frustrated and discouraged ..." and the answer that came back was "That's OK."

It's OK to have minutes where we don't feel very happy about things. And when we turn to God in prayer and tell Him about those minutes, something really interesting happens. We learn more about ourselves and we learn more about our Savior. Our expressions of frustration or anger or sadness or discouragement activate His grace, and with His help, we get through that minute. Sometimes those minutes come back more often than we'd like, but each time they do, we can invite Jesus to help us. And He will.

Those kinds of prayers, for me, also make my relationship with God more real. I don't always have to be happy and positive. Sometimes I can be mad, or sad, or discouraged, or lonely. And when I tell Him about those times, invariably His response is one of love and compassion.

I'm not perfect and that's OK - God loves me exactly the way I am. What a wonderful thing.

This weekend I have been trying to take it easy, resting and reading and not cleaning and not working. It turns out that I'm still exhausted by dinnertime even when I don't do much. So I will keep resting until that changes. It occurred to me last night that perhaps some of the things Father wants me to learn from this are how to slow down and how to be content with doing less. (I'm not very good at that.) Thankfully, I have good people all around me who pick up the slack when I can't do all I want to be able to do, and they do it cheerfully and willingly because they love me. That is a great blessing.

And one last happy thought:

My lovely, wonderful visiting teacher came over last night with two bags of grapefruit, freshly picked and still warm from the 75+ degree sunshine we had all day yesterday. It smelled like heaven. So I juiced three and drank it with dinner. Happiness in a glass!

Saturday, February 7, 2015

Chemo, Round 2

When I was diagnosed with cancer, I looked for blogs written by people who had a similar diagnosis to see what I could learn. I found two kinds of blogs - the kind where the person posted about their entire experience after the fact; and the kind where the person posted at the beginning of their cancer experience, and then again at the end after they were in remission. I didn't find much out there about the experience in the middle. So I decided I would try to fill in that gap.

First, though, some reflections on the three weeks that made up Round 1. Psychologically, I like saying the "round" is over after I've had the chemo infusion, but that's not really how it works. The infusion is just the beginning, after which there are seven to ten days of recovery, wherein I experience all manner of side effects of varying intensity and obnoxiousness. Once I start to feel good again, though, things go really well!

My oncologist was happy when he heard I didn't have much nausea, and told me the first round is the hardest so things should get even easier in future rounds. I will believe him after I've been through a few more. :-) It's better to be prepared for the worst and then be pleasantly surprised, in my opinion, than to expect a good experience and then end up having a not-so-good one.

During my feeling-good days last week, I accepted a job. I'm really excited about it, and in truth, it's a miracle it happened at all. The best part is that it will give me something to keep my mind off the chemo side effects on the less good days, as well as keeping me occupied on the days I feel great. And when I beat cancer, I will already have a plan in place for what's next! After ten months of unemployment (and job hunting, and - in some minutes - wondering whether I was physically well enough to work), having work to do and being able to contribute to the general good in the world makes me really happy. Plus I get to work with some really awesome people - double bonus!

The first few days of work (at the beginning of this week) were great. They also happened to coincide perfectly with the hair on my head starting to thin and fall out... so that was an adventure. I could run my fingers through my hair and pull out a small handful at a time, over and over. (Don't worry. I didn't do this at work. Just in the evenings after I was home.) By the third day of hair-falling-out-ness, there were patchy bald places on my head, what was left was thin and static-y, and I was ready to be done with it. So I got out my hair cutting kit and cut what was left all down to 1/4 inch. Now I get to wear hats and head scarves - yay! (I might not love it once it gets hot, but I do now.) The hair that is left will fall out on its own over the next week or so, most likely. But now I don't have to worry about what to do with it.

Round 2 started on Thursday. I busted out my laptop and worked on some projects during the infusion. It was a little harder to focus for the first few minutes after the Benadryl kicked in (part of the pre-medication regimen), but other than that, I felt like I was really productive, and it made the time go by pretty quickly. Round 2 didn't take as long as round 1, since they didn't have to dose up the monoclonal antibody this time, so I was done in just under 4 hours. It will take about that long for all the other rounds, too. Two down, four to go!

So far, the side effects seem to be the same as last round, but I'm either handling them better or they are slightly less intense. Probably some of both; it helps a lot to know what to expect. That said, the worst of the recovery days will start tomorrow if the pattern continues, so I'm not to the hardest part yet. Keep an eye out for another post if you want to know how it really went. :-)

Special thanks to all my friends who are taking care of me this weekend. I couldn't do it without you. The visits, balloons, rides, and conversation make my cancer adventure more enjoyable.

In other news:

I bought a book today by my favorite 10-year-old author. I'm excited for it to come in the mail so I can read it. His last one was pretty neat, and I have heard good reviews on this book as well! You can find it on Lulu here.

And... the sun is shining! (It does that a lot in Arizona...) I love the feel of warm sun on my back. It makes me happy.

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.