Sunday, May 14, 2017

What I'm Thinking About

My first season of singing with the Salt Lake Choral Artists has been over for two weeks, and I'm already missing it. That must mean it was a good decision to join. Now I just have to figure out what to do to fill my time until the fall when it starts up again... Next year's season is going to be awesome - John Rutter, an Easter Passion, some Bluegrass, and more. I'm kind of excited already, and the first practice is still over 3 months away. :-)

As I was preparing for today's Sunday School lesson this weekend, I rediscovered a scripture that gave me lots to think about. It's in D&C 109:50-53. Referring to the people who persecuted and drove the Saints out of their homes, Joseph Smith prayed:

Have mercy, O Lord ... that they may cease to spoil, that they may repent of their sins if repentance is to be found; But if they will not, make bare thine arm, O Lord, and redeem that which thou didst appoint a Zion unto thy people. And if it cannot be otherwise, ... may thine anger be kindled, and thine indignation fall upon them, that they may be wasted away, both root and branch, from under heaven; But inasmuch as they will repent, thou art gracious and merciful, and wilt turn away thy wrath when thou lookest upon the face of thine Anointed [Jesus Christ].

Here is what struck me about these verses - the word anger comes from Old Norse angr, meaning "grief", and angra, meaning "vex". It would not surprise me one bit if our Father, as a loving parent, sees our unwise (and sometimes downright wicked) choices and feels anger - not in the modern sense of the word, but rather in the sense of intense grief. That makes the next section of the scripture even more touching - when in His grief or anger, He turns to look upon the face of His Only Begotten Son, who has atoned for the sins of the world, including the very sins that made our Father grieved, the Father's feelings of grief are replaced with grace and mercy. The atoning blood of Jesus and the love that motivated it make possible the repentance (re-turning toward God) of each of God's children. And when we re-turn to Him, He can freely forgive us because of that atonement.

Speaking of repentance, here is a quote that I absolutely LOVE by Elder Weatherford T Clayton:

As we act on His words, we are doing something called repenting. In the New Testament, repentance comes from the word metanoeó, from the words metá and noeó, meaning "to change one's mind or purpose." Isn't that interesting? Every time we turn more to Christ, we are repenting - we are following Him. When we sincerely pray to the Father, in a very real sense we are repenting. When we read the scriptures and ponder them, we are repenting. As we make changes because of what we are learning about Christ and His gospel, we are repenting. When we do things that make us better, kinder, gentler, more sensitive, more spiritual, more virtuous, and truer, we are repenting. Whenever we choose the better path, we are repenting. Though we all repent of things that are sinful in our lives, most of our repenting comes from hearing His words and doing them - from turning to Him.

Isn't that cool? It is so much easier for me to relate to than the steps of repentance that I learned as a child (recognize, regret, confess, forsake, make restitution, etc. - they aren't wrong, but they are perhaps incomplete, because they assume that repenting only has to do with sin). Read the rest of Elder Clayton's talk here (it's a BYU devotional, totally worth your time).

And those are my thoughts for tonight. Happy Sabbath!

Saturday, April 1, 2017

A(n Almost) Two Year Update

You will be pleased to know I have moved back into the 21st century, and I now have internet at home. The lack of internet was also my reason for ignoring this blog for nearly a year... so I figured I had better post now that I am left without excuse. Thanks, Google Fiber! (And no, that's not sarcastic. Internet at home is basically life-changing. I have so many more options!)

It has been exactly 23 months since my final round of chemotherapy; in one month, I will pass the two-year mark. Recently, I have decided I am really and truly "back to normal" (yes, I know it is for the eighth or ninth time, but this time it's for reals!). What tipped me off was that I could spend a whole afternoon shopping with my sister - after a morning of being on my feet at choir rehearsal - and have fun without needing a week to recover! And then my interest in doing optional activities skyrocketed... and I have started wanting to do things that require emotional investment. That has been kind of strange, to be honest. It's been a long time since I've had emotional energy for optional stuff. I am still figuring out what to do with this newfound capacity. :-)

I should probably also note that having emotional energy for optional stuff only happened after I worked through the emotional aftermath of treatments and recovery. Around the same time I realized I was physically "back to normal", there were a few months during which I had to work through some significant (for me) anxiety and PTSD-like symptoms. Getting my annual physical was a stressful experience; going to the dentist to get cavities filled was even more difficult. After some searching and studying, I discovered a few things that helped tremendously: daily guided meditation (I use an app called Headspace), and expressing my anxieties and asking for what I think will help. Doing the latter helped me to feel like I was acting and not just being acted upon - and the experiences were better as a result. The former is so good for me, it's helping in multiple areas of my life, not just with anxiety. I highly recommend it.

It is interesting to consider that when I meet people now, they won't know by looking at me that I once had cancer. There are a whole pile of people in Arizona who only knew me when I was sick. There is another set of people here who met me just as I was finishing treatments, and who have watched me recover. But now, my hair is long enough to look intentional, I am back to my old self physically and emotionally, and there are no obvious signs (other than a few scars and tiny tattoos) that would indicate what has happened to me - which is good. I have moved on. Cancer doesn't define me, and never will. It was a defining experience in my life, to be sure, and was a sacred time of learning and growth, but my identity is distinct from that experience.

So I guess this is my way of saying to the cancer experience, Goodbye forever. I'm sure I'll find new ways of progressing now.

In other news, spring has sprung in Utah, hopefully for good this time, and I am looking forward to warm days and sunshine. That said, I also should admit that I spent much of the afternoon coming up with good reasons why later was a better time to start working in the yard. This year I have decided that I don't really want to do all the work my yard requires, so I need to choose which parts to hire out and which parts to ignore. I have a feeling there won't be much left to do after that. :-) It sort of makes me wonder why I bought a house with a yard (instead of a condo with someone else who does the yard), but it's too late now. I'm committed to this neighborhood. So, here I will stay. Dandelions and all.

Friday, April 8, 2016

A Short Spot on Gratitude

For the past few weeks, as spring approaches and my yard needs cultivating and encouraging back to life, I have become increasingly grateful for my health and the increased capacity that being well provides.

Tonight, it culminated with me looking in the mirror and realizing that I am extraordinarily grateful for my eyebrows and eyelashes. Last year around this time, I didn't have many of either. So tonight, they are a reminder of all I have been blessed with. And it is always good to be grateful.

Thursday, January 7, 2016

My One Year Anniversary

I have been putting off writing this post for some time now. I could give you a whole range of excuses, but I’ll spare you the details and get on with what I hope is useful content instead.

First, the most important old news: I had a follow up CT scan in November and it came back looking good! So I am still in remission (yay!), and – even better – the guidelines for follow up on patients who had non-Hodgkin primary mediastinal B-cell lymphoma have changed, so I don’t have to have continuing scans every six months (double yay!)! It turns out that after a bunch of research, experts have decided that they don’t find any more cases of recurrence by doing scans than they do by monitoring for symptoms, so I don’t have to experience the CT scan trauma every six months like I was expecting. Which is especially good because (unfortunately) my experience was a little traumatic. The first time I had a CT, it was a contrast CT, but they didn’t have me drink digestive contrast, they only injected it into my bloodstream. This time, however, they wanted me to do both. Drinking the digestive contrast (it’s a flavored barium liquid that looks like skim milk but splats like something thicker if you spill) is not a terrible experience in and of itself. Mine was berry flavored (if they ask you for your preference, go for cold, not room temperature). It didn’t taste like chalk like I’d been expecting, but it’s a lot of liquid (2 full bottles, maybe 32 ounces total) in about 2 hours. I can drink that much water in that amount of time, but barium is a different story. Couple that with no other food or drink for 8 hours before the scan, then add that the room where we did the scan was chilly, then add to that lying down while the tech attempted to insert an IV so they can inject the other contrast, and well, the combination of fasting (which makes my veins harder to find) plus cold (ditto) plus lying down (which is a super vulnerable position, in my opinion) plus having been poked numerous times before and thus having very tender, worn out veins (which makes the veins hard in addition to being hard to find), made the IV part of the process not so much fun. Thankfully, the medical professionals taking care of me were compassionate and understanding. And once it was over and I had taken some time to recover physically and emotionally (read: the next day – or maybe two days later) it was all fine. So fine, in fact, that I didn’t even bother looking at the scan results. (Or maybe it’s more accurate to say I was so DONE with the whole experience by the time it was over that I didn’t care to look at my scan results…) At any rate, the next week I went to see my oncologist in follow up and she gave me the aforementioned two pieces of good news. And then I was very happy to fly home to Phoenix to celebrate Thanksgiving – because I really do have a lot to be thankful for!

And then we ate pie. Because pie is delicious.

December was an anniversary month for me. I tried to avoid thinking about it on the theory that it would be easier than reliving some of the emotions I had dealt with a year ago last month, but wasn’t very successful. In the end, it was a good experience to reflect on the past year and remember all that I have been blessed with. It has now been more than a year since I had pneumonia, received my initial possible-lymphoma diagnosis, and had the biopsy + port insertion surgery. I still have ahead of me the year mark for starting chemo and for finishing chemo. The latter will be the most awesome.

During church last week, I was reflecting on the experience I had the Sunday after my surgery (which was the Sunday after Christmas 2014). I was too unwell to go to church that day, for obvious reasons, so the young men of the priesthood came to my parents’ home after church was over to administer the sacrament to me. As I remembered the feelings I had that day as I participated in that sacred ordinance that was performed just for me, I felt overwhelming gratitude for all I have experienced since and what it has taught me.

The scriptures that come to mind most readily when I consider all I’ve learned are these: “And now, the plan of mercy could not be brought about except an atonement should be made; therefore God himself atoneth for the sins of the world, to bring about the plan of mercy, to appease the demands of justice, that God might be a perfect, just God, and a merciful God also.” (Alma 42:15) And also: “I would that ye should understand that God himself shall come down among the children of men, and shall redeem his people.” (Mosiah 15:1) When Jesus Christ came to earth to live as we live, suffer as we suffer, feel all that we feel, and atone for all the sins, injustices, wrongs, pains, sorrows, and sadness of this world, He came as God – not man. This work was so important that God did not delegate it away. He did it Himself. Somehow, my experience with extreme difficulty made that fact real to me, and helped me to feel that God would see me through it. And He did.

The past year was eventful. And full.

In January, I received my official lymphoma diagnosis, started chemotherapy, and received and accepted a job offer (in another state – with remote work options, fortunately).

In February, I started working, traveled to Utah twice for work, and continued chemo in Arizona.

In March, I traveled to Denver for the Epic Pi Day (3.14.15 9:26 am) with my dear friends and met up with another dear friend from Boston while I was there; I also flew from there to Utah for work, had another round of chemo, and then spent the rest of the month recovering.

In April, I traveled to Cleveland for work, had a visit from another old Boston friend, and finished the last two rounds of chemo.

In May, I had a follow up scan that came back clean, so I moved to Utah and found a place to rent in Salt Lake (thus making my commute to the office a little easier).

In June, I started radiation.

In July, I finished radiation and made an offer on a home.

In August, I closed on my home and moved in (which also required the purchase of stuff like furniture), and was called as the Relief Society Secretary in my ward.

In September, I traveled to Boston to see old friends and started physical therapy.

In October, I finished physical therapy and we had our commercial product launch at work. (Notably, when I was hired, this was originally scheduled for April, so I felt very blessed that the launch delays gave me time to recover from my little adventure, making it possible for me to manage the increased workload associated with getting commercially up and running.)

In November, I had my 6-month follow up scans that came back clean and I traveled to Phoenix for Thanksgiving with family and visits with the wonderful friends who took such good care of me during chemo; I also taught myself how to crochet.

In December, I finished an overly ambitious but inspired Christmas project (4 scarves and 2 shawls), had my one year anniversary of my unofficial diagnosis, stayed up past midnight more times than I’d like to admit (which perhaps also meant that I was finally fully recovered from chemo), drove to Provo and back at least 5 times in the last two weeks of the year, and thoroughly enjoyed spending time with family for the holidays.

When I think about all I have managed to accomplish, I wonder at my own stubbornness and tenacity, and I feel gratitude for Christ’s grace and mercy. His hand was in it all.

And I am looking forward to a hopefully less eventful but no less blessed year in 2016.

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.) :-)