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.
(etc.)
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
Sunday, March 29, 2015
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.
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
Scans
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.
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.
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.
Subscribe to:
Posts (Atom)
