I've been asked many times how I found out I have Lymphoma, so here's the story. But I feel I must add a disclaimer - WebMD.com has only accurately diagnosed me with cancer ONE time.
Since January of this year, I've been sick with every illness imaginable. The flu, stomach bugs, colds, sinus infections, everything. This is unusual for me. I typically have an immune system of steel. But not this year, apparently.
Mixed in with all those illnesses, I was tired. All the time tired. Like, take a 2-hour nap every day and still go to bed at 8:30 pm tired. I blamed the fact that I had been sick off and on for months and was simultaneously very busy with life. I napped when I needed to and carried on.
Then, maybe around mid-February, early March, I started waking up in the middle of the night drenched in sweat. It wasn't just once or twice due to monthly hormone changes. It was every night, without fail. I'd wake up completely soaked. I was changing the sheets constantly. But again, didn't put it together with the fatigue, just figured I had some sort of hormonal thing going on, or maybe it was related to another new illness that was hitting me. I'd deal with it at my next annual physical.
Also around this time, I'd start feeling light-headed whenever I exercised. I stopped running because of it. Then, mid-March, the light-headed feelings started happening whenever I was on my feet for too long. Again, I figured it was related to lingering congestion/illness.
For spring break I took the kids up to visit my mom in Minnesota. I was wiped. I spent most of that visit resting on her couch or napping while she took the kids out in the snow to play.
One afternoon, after wrestling on the floor with the kids, I tweaked a muscle in my neck. While I was massaging it, I found a quarter-sized lump in the left side of my neck. I was almost certain it was a lymph node. And between that and the fatigue, I was almost certain I had mono.
Like any tech-savvy hypochondriac, I hit WebMD to check my symptoms. Mono WAS one of the options. But, oh "ha ha ha" so was lymphoma. "Hey, mom, ha-ha-ha all these symptoms say I have lymphoma. But it's totally mono." It was not totally mono.
The next Monday, I called my doctor's office, figuring I'd better at least get it checked out. They wanted me in right away. Andy had left that morning for a work trip, so I was on my own at the doctor's. But big deal, it was just mono, right?
My doctor is awesome at listening and normalizing feelings while remaining very rational. He said that my symptoms were mildly concerning, but that we'd just get it all checked out so I could rest easy. He sent me for blood work and a chest x-ray. Within 15 minutes of having the x-ray, my doctor sat me down and told me he wanted me to go immediately to the hospital and get a CT scan because there were "some concerning spots" on my lungs and they wanted to rule out lymphoma. THIS IS NOT HOW YOU DIAGNOSE MONO, was what I kept thinking.
At this point, I texted my mom and she began driving from the Twin Cities. I texted Andy and he began making arrangements to return immediately from his business trip. Then I went and had the CT scan done. I was also contacted by a surgeon to schedule a biopsy of the swollen lymph node.
You know those dreams where you're trying to run but either you feel like you're underwater or your feet are stuck in really gooey mud? Or you got on a train that you're not supposed to be on, but it just won't stop speeding down the tracks so you can get off? Or some horrible combination of all that? I felt like that for a solid week. Waiting for results, meeting the surgeon, going in for my first ever surgery, recovering from that surgery. Waiting, waiting, waiting, waiting....
And then the call came while I was in the library at school. Thankfully, I was able to step out and speak with the doctor. The CT scan showed a mass on my right lung and several other areas of concern. The biopsy confirmed Nodular Sclerosing Hodgkin's Lyphoma. I was being referred to an Oncologist. I was going to need chemo. My surgeon would see me again the following week to install a port. Did I have any questions? (Yes, how the hell do I get off this train?!)
Within two weeks, I started chemo. Four weeks after that, I had a second (unexpected and truly horrific) port surgery to replace the first port that wasn't functioning properly. And now, three weeks beyond THAT, I'm preparing for my fourth chemo treatment, which will put me at 1/3 of the way through treatment. It's going so fast in the most excruciatingly slow way (if that makes any sense).
Looking back at how quickly everything moved from that first doctor's visit to where we are now, it makes sense to me why I'm starting to struggle a little bit mentally with this situation. I didn't have time to really think about any of that. I just showed up for all my tests and appointments and procedures like I was told to. I was so happy and relieved to have a few good days mixed in with the bad, that I thought I could breeze through this, no problem!
As I'm settling into a routine of treatment, and the "newness" and "scariness" of this has worn off a bit, I've had time to process. Cancer sucks. There's a reason that's a slogan on t-shirts and buttons. There's even a website! My entire family is impacted by this illness, in some ways I don't even fully know yet. I'm completely sidelined from my life for now. I have no control over so many things that it's kicking up the depression that I was already medicated for before all this began.
It has also brought so many very good things that I can't neglect to mention. My family is very close through this. I love knowing that I can rely on them when I need to. I've rediscovered what I already knew - that my friends near and far are amazing and caring people who will do anything to support the people they love. Other survivors are incredible at reaching out and helping a newbie through the emotional roller coaster of diagnosis and treatment - and one solid lady in particular lets me text her late into the night about my worries and questions (Lauren, you are A WONDERFUL blessing and friend through this. THANK YOU!). Though I may feel alone, I'm really not. Help, support, laughter, a shoulder to cry on, a meal for my family, a friend for my kids , even walks for my dog- it's all just a phone call or text message away. I can't fully explain how good that makes me feel.
While I still feel cancer is stupid (I don't think I'll ever not feel that way!), I'm thankful for the blessings of family and friendship that have been strengthened because of it.
Tuesday, June 12, 2018
Thursday, June 7, 2018
How to Fight Cancer
Fighting cancer. Cancer warrior. Survivor.
All terms I've heard in relation to cancer treatment. All terms I've used at one point or another. Now, terms I'm unfortunately familiar with. I know a few friends who are also intimately familiar with what it means to fight cancer, but for those who haven't climbed this mountain, do you know what it means to "fight" cancer?
It means being exhausted down to my bones. I am tired all the time. I go to bed tired. I wake up tired. I nap every day. I'm so tired that I can't even sleep (yeah, noodle on that one for a while). I'm just TIRED. Between the cancer and the chemo, I'm wiped out. And I have no energy for anything. A trip to the grocery store equals a two hour nap. This is beyond frustrating as I used to enjoy being a very busy person. Resting seems like a ridiculous way to fight, but that is battle strategy numero uno these days.
Fighting cancer means I have no control over anything except my own thoughts. Want to cut my body? Sure, I can't stop you. Need to pump me full of poison to blast the cancer out of me? Sounds like a great time, be my guest. Want to take all my hair, my endurance, my free time, my volunteer work, my plans and flush them all down the toilet - have at it. The only thing I can control in this whole stupid experience is how I think about these things that keep happening to me, whether I want them to or not. Most days the power of positive thinking wins out. But sometimes, my thoughts spiral to a dark place that involves googling statistics that I've now pinky-promised 3 important people not to google ever again. I actively have to keep my thoughts on the right track or it gets real ugly, real fast.
Every great warrior needs a side kick. And I've found mine for this battle. She is the counselor who works at my cancer treatment center. And she is AMAZING. She is a survivor herself so she gets it. She understands the challenge of going through this process with young kids. She knows the middle-of-the-night sleepless temptation to google things you shouldn't. She knows that the loss of control over nearly everything is like getting pounded over and over by huge, unrelenting ocean waves. She gets it. and she makes me feel normal in all of this.
Like many locked in battle, I have family and friends on the sidelines who are hurting and worried too. And though I'm the only one that can fight this fight, they feel my challenges and my pain deeply. It's hard watching your kids be stressed about bringing any germs into the house. It's physically painful hearing your 6 year old frantically tell his friend to wash her hands so his mom doesn't get more sick and die. It's hard to cry to my husband about how much this sucks and see how helpless he feels to take any of it away for me. And I keep saying how thankful I am that it's me who is sick and not either of my kids - but I am someone's kid, and she is scared and stressed and doesn't deserve to watch her child go through this either.
It's still just cancer. I'm still pushing through this with a big smile on my bald head. But I am further exhausted by all this talk of fighting. I'm not brave or strong. I'm not an actual warrior. If anything, I'm desperate. Desperate to get my life back to normal. Desperate for my kids to know that I'm not going anywhere. Desperate for this to not be my ENTIRE LIFE any more. Ugh.
In closing, cancer is stupid. Having cancer is stupid. Everything is stupid. I need a nap.
All terms I've heard in relation to cancer treatment. All terms I've used at one point or another. Now, terms I'm unfortunately familiar with. I know a few friends who are also intimately familiar with what it means to fight cancer, but for those who haven't climbed this mountain, do you know what it means to "fight" cancer?
It means being exhausted down to my bones. I am tired all the time. I go to bed tired. I wake up tired. I nap every day. I'm so tired that I can't even sleep (yeah, noodle on that one for a while). I'm just TIRED. Between the cancer and the chemo, I'm wiped out. And I have no energy for anything. A trip to the grocery store equals a two hour nap. This is beyond frustrating as I used to enjoy being a very busy person. Resting seems like a ridiculous way to fight, but that is battle strategy numero uno these days.
Fighting cancer means I have no control over anything except my own thoughts. Want to cut my body? Sure, I can't stop you. Need to pump me full of poison to blast the cancer out of me? Sounds like a great time, be my guest. Want to take all my hair, my endurance, my free time, my volunteer work, my plans and flush them all down the toilet - have at it. The only thing I can control in this whole stupid experience is how I think about these things that keep happening to me, whether I want them to or not. Most days the power of positive thinking wins out. But sometimes, my thoughts spiral to a dark place that involves googling statistics that I've now pinky-promised 3 important people not to google ever again. I actively have to keep my thoughts on the right track or it gets real ugly, real fast.
Every great warrior needs a side kick. And I've found mine for this battle. She is the counselor who works at my cancer treatment center. And she is AMAZING. She is a survivor herself so she gets it. She understands the challenge of going through this process with young kids. She knows the middle-of-the-night sleepless temptation to google things you shouldn't. She knows that the loss of control over nearly everything is like getting pounded over and over by huge, unrelenting ocean waves. She gets it. and she makes me feel normal in all of this.
Like many locked in battle, I have family and friends on the sidelines who are hurting and worried too. And though I'm the only one that can fight this fight, they feel my challenges and my pain deeply. It's hard watching your kids be stressed about bringing any germs into the house. It's physically painful hearing your 6 year old frantically tell his friend to wash her hands so his mom doesn't get more sick and die. It's hard to cry to my husband about how much this sucks and see how helpless he feels to take any of it away for me. And I keep saying how thankful I am that it's me who is sick and not either of my kids - but I am someone's kid, and she is scared and stressed and doesn't deserve to watch her child go through this either.
It's still just cancer. I'm still pushing through this with a big smile on my bald head. But I am further exhausted by all this talk of fighting. I'm not brave or strong. I'm not an actual warrior. If anything, I'm desperate. Desperate to get my life back to normal. Desperate for my kids to know that I'm not going anywhere. Desperate for this to not be my ENTIRE LIFE any more. Ugh.
In closing, cancer is stupid. Having cancer is stupid. Everything is stupid. I need a nap.
Sunday, May 20, 2018
To Shave or Not to Shave
The great exodus has begun. My hair is fleeing my head in unimaginable quantities. My shower drain and bathroom sink look like a Wookiee bathes here. When I rolled my car window down earlier this week, I could see strands of hair blowing out the window the entire drive. I snorted a strand up my nose when I laughed this afternoon. It's funny and troubling at the same time.
I'm okay with being bald, in theory. I'm fine with donning scarves and rocking hats for the summer. What I'm struggling with is that right now, when I go out on my good days, the whole world doesn't know I'm sick. I feel like when my hair is gone, I'll have a giant neon sign over my head blaring "cancer patient".
I've tried to come up with ways to make this fun. Anna and Henry will be my barbers when the time comes. Anna is unbelievably (freakishly) excited about this. Reflecting on her bedside manner as a toddler doctor, this was maybe not my best plan of action! I've bought myself some fun scarves to wear and found some different ways to tie them on YouTube. We're planning to draw Voldemort's face on the back of my head, wrapped under a purple turban a-la-Quirrell from the first Harry Potter (NERD POWER!). But now that the time is getting close, I'm a lot less excited than I hoped I would be.
It seems like cancer has very quickly stripped a lot of things I love from my life. I had to give up my volunteer work at school, teaching Sunday school at church, running and Jiu-jitsu, working in the library, often even existing outside of my bed. And now my appearance is going to change and it's one more thing that I have no control over.
One of the prayers in our church service this morning included a line about facing challenges with patience as God works His will in our lives. Heard that one, God! I'm trying! I'm trying to remember this is a temporary situation. That in a few months I won't have to go for chemo any more. That my hair will grow back. That I can rejoin my workout groups and rebuild my running. I'm not giving up any of these things forever.
But, man, I feel like Squirt the turtle in Finding Nemo when he jumps out of the East Australian Current. I can see all of life still speeding past me while I'm just sitting there, still, in the water. And it is SO FRUSTRATING.
And now I'm going to be bald like Squirt the turtle too?! Aaarggghhh! I don't want this! But I have it. So...
Whether I want it or not, my hair is falling out. And shaving is imminent. I think it needs to happen soon. Every meal I cooked this weekend had my hairs in it (as did the custard I dished up for my kids as a snack this afternoon). It's everywhere. Help me decide - when am I shaving this rapidly shedding mop of mine?
I'm okay with being bald, in theory. I'm fine with donning scarves and rocking hats for the summer. What I'm struggling with is that right now, when I go out on my good days, the whole world doesn't know I'm sick. I feel like when my hair is gone, I'll have a giant neon sign over my head blaring "cancer patient".
I've tried to come up with ways to make this fun. Anna and Henry will be my barbers when the time comes. Anna is unbelievably (freakishly) excited about this. Reflecting on her bedside manner as a toddler doctor, this was maybe not my best plan of action! I've bought myself some fun scarves to wear and found some different ways to tie them on YouTube. We're planning to draw Voldemort's face on the back of my head, wrapped under a purple turban a-la-Quirrell from the first Harry Potter (NERD POWER!). But now that the time is getting close, I'm a lot less excited than I hoped I would be.
It seems like cancer has very quickly stripped a lot of things I love from my life. I had to give up my volunteer work at school, teaching Sunday school at church, running and Jiu-jitsu, working in the library, often even existing outside of my bed. And now my appearance is going to change and it's one more thing that I have no control over.
One of the prayers in our church service this morning included a line about facing challenges with patience as God works His will in our lives. Heard that one, God! I'm trying! I'm trying to remember this is a temporary situation. That in a few months I won't have to go for chemo any more. That my hair will grow back. That I can rejoin my workout groups and rebuild my running. I'm not giving up any of these things forever.
But, man, I feel like Squirt the turtle in Finding Nemo when he jumps out of the East Australian Current. I can see all of life still speeding past me while I'm just sitting there, still, in the water. And it is SO FRUSTRATING.
And now I'm going to be bald like Squirt the turtle too?! Aaarggghhh! I don't want this! But I have it. So...
Whether I want it or not, my hair is falling out. And shaving is imminent. I think it needs to happen soon. Every meal I cooked this weekend had my hairs in it (as did the custard I dished up for my kids as a snack this afternoon). It's everywhere. Help me decide - when am I shaving this rapidly shedding mop of mine?
Monday, May 14, 2018
Revising My Goals for 2018
Every year on New Year's Eve, it's tradition that I set goals for myself for the year ahead. My goals for 2018 were:
*Run 360 Miles
*Bike 500 Miles
*Swim a whole bunch of yards
*Visit 3 National Parks
*Read 55 books
Needless to say, the athletic goals have taken a major back seat, as breathing is not currently my strongest skill. Working on that! But that doesn't mean I can't readjust and still set some goals for myself to work toward while I'm kicking cancer to the curb!
*Learn to knit a sock - this is proving challenging. I may add a second sock if I can ever get the first one to turn out.
*Read 65 books - Thanks to many, many sick days and hours of waiting at doctor appointments I'm already finished with 27 books for this year. I think 65 is an achievable challenge.
*Use my downtime to connect with and encourage others - I have so much time to check in with friends, and I want to use that to my fullest ability. I love keeping in touch with people, so this will be a good one for me.
*Make memories with my kids - My mobility may be more limited, but I can still do things like teach Anna how to sew and color with Henry. We can comb the back yard for bugs and fill the kiddie pool for Ginny to splash in. There are plenty of adventures to be had this summer, and I plan to enjoy them!
I don't like having to give up my original plans for this year. Plans to be outside and active, traveling, moving far beyond the reaches of my couch and bed. But I'm starting to see the value in putting that off and focusing on the things I can do while I recover. It's OK to move things around, to take a step back from the busy-ness of my life, which I love, to focus on getting better. And I can still have fun and achieve things while I rest!
*Run 360 Miles
*Bike 500 Miles
*Swim a whole bunch of yards
*Visit 3 National Parks
*Read 55 books
Needless to say, the athletic goals have taken a major back seat, as breathing is not currently my strongest skill. Working on that! But that doesn't mean I can't readjust and still set some goals for myself to work toward while I'm kicking cancer to the curb!
*Learn to knit a sock - this is proving challenging. I may add a second sock if I can ever get the first one to turn out.
*Read 65 books - Thanks to many, many sick days and hours of waiting at doctor appointments I'm already finished with 27 books for this year. I think 65 is an achievable challenge.
*Use my downtime to connect with and encourage others - I have so much time to check in with friends, and I want to use that to my fullest ability. I love keeping in touch with people, so this will be a good one for me.
*Make memories with my kids - My mobility may be more limited, but I can still do things like teach Anna how to sew and color with Henry. We can comb the back yard for bugs and fill the kiddie pool for Ginny to splash in. There are plenty of adventures to be had this summer, and I plan to enjoy them!
I don't like having to give up my original plans for this year. Plans to be outside and active, traveling, moving far beyond the reaches of my couch and bed. But I'm starting to see the value in putting that off and focusing on the things I can do while I recover. It's OK to move things around, to take a step back from the busy-ness of my life, which I love, to focus on getting better. And I can still have fun and achieve things while I rest!
Tuesday, May 8, 2018
It's Just Cancer!
I haven't blogged in 3 years. I used to write up all my funny kid stories here, but when my kids started getting old enough to read, I felt weird sharing their stories. Now I'm going to use this space as a way to keep track of an entirely different adventure. And yes, I'm looking at it as an adventure. Not always pleasant, but certainly still an adventure.
I have Nodular Sclerosing Hodgkin's Lymphoma. What on earth possessed my body to go and get cancer? I have no idea. But here we are. I was diagnosed about 3 weeks ago and life has been a bit of a whirlwind since then. I've had 1 round of chemo, 2 surgeries, 2 chest x-rays, 2 CT scans, a PET scan, an echocardiogram, a pulmonary function test, 2 visits to the ER for breathing issues and countless blood tests since then. I've googled more versions of "symptoms of lymphoma" and "tips to survive chemo" and "recurrence rates of Hodgkin's Lymphoma" than I can count. I've been terrified, numb, angry, sad, hopeful, and happier than I ever thought I could be in a situation like this. I'm a future cancer survivor, a current cancer warrior.
During my second visit to the ER for some difficulty breathing and strange heart rhythms (looking back, I'm almost certain it was a panic attack), the doctor on call had a look at all my tests and came back to the room to tell me, "Good news - It's just cancer!" Betcha don't get to say that often, do ya?! They were concerned about blood clots on my lungs, but, no. It was just that pesky cancer, nothing more serious (!!). But I kind of love that statement. It's just cancer. It's not a death sentence (for me, it's curable, which I am unspeakably grateful for!). It's just a temporary part of life that's going to show me how many amazing people God has surrounding me. Have you ever had hundreds of people praying for you? It's a feeling I can't describe. It would be impossible for me to sink with this many people keeping me afloat.
The kids are doing well with everything. I think they are feeling big things that are coming out in different ways - moodiness, clingy-ness. But it's all understandable. We are being very open with them and making family time a priority now more than ever. I actually feel like things with our family are really, really good right now. (And if you have to endure a crisis, Andy is the man you want by your side, let me tell you!)
I had my first round of chemo a week and a half ago. the actual receiving of the chemo drugs is kind of a relaxing experience. My port is a GODSEND - IVs in my arms make me really woozy. I can't stand to look at them or feel the pulling of the tubing. BLECH! With the port, I get one stick for the whole visit. Then I sit in the recliner for hours with my fluffy socks and fuzzy blanket, sipping ice water and reading whatever my little heart desires. (I am going to blow my reading goal out of the water this year!). Thanks to a regimen of steroids (evil bastards) and anti-nausea meds, I don't feel much of anything for a day or 2 after chemo. Just an icky taste in my mouth and some fatigue. But days 3-5 are rough as I come down off the steroids. Then I get an entire week of feeling pretty close to normal before I do it again.
I'm going to sound ridiculous. But I GET A WHOLE WEEK OF FEELING SEMI-NORMAL!!! I really thought I was going to spend the next 6 months feeling nauseous, huddled on my couch. But I can still have a life in between treatments! I can still be with my kids and play with my dog and cook and go to church and have friends over to visit, and, and, and... The amount of happiness I feel about this is crazy.
I'd like to use this blog to keep everyone updated on how things are going with my treatment. I will have 12 total rounds of chemo (1 down already!), every other Friday. Round 2 is at the end of this week. I love hearing from people, so please don't hesitate to email or text or call! I silence my phone if I'm sleeping, but I'll respond when I can. I'm really excited to kick this in the butt and get back to normal life.
After all, it's just cancer. :)
I have Nodular Sclerosing Hodgkin's Lymphoma. What on earth possessed my body to go and get cancer? I have no idea. But here we are. I was diagnosed about 3 weeks ago and life has been a bit of a whirlwind since then. I've had 1 round of chemo, 2 surgeries, 2 chest x-rays, 2 CT scans, a PET scan, an echocardiogram, a pulmonary function test, 2 visits to the ER for breathing issues and countless blood tests since then. I've googled more versions of "symptoms of lymphoma" and "tips to survive chemo" and "recurrence rates of Hodgkin's Lymphoma" than I can count. I've been terrified, numb, angry, sad, hopeful, and happier than I ever thought I could be in a situation like this. I'm a future cancer survivor, a current cancer warrior.
During my second visit to the ER for some difficulty breathing and strange heart rhythms (looking back, I'm almost certain it was a panic attack), the doctor on call had a look at all my tests and came back to the room to tell me, "Good news - It's just cancer!" Betcha don't get to say that often, do ya?! They were concerned about blood clots on my lungs, but, no. It was just that pesky cancer, nothing more serious (!!). But I kind of love that statement. It's just cancer. It's not a death sentence (for me, it's curable, which I am unspeakably grateful for!). It's just a temporary part of life that's going to show me how many amazing people God has surrounding me. Have you ever had hundreds of people praying for you? It's a feeling I can't describe. It would be impossible for me to sink with this many people keeping me afloat.
The kids are doing well with everything. I think they are feeling big things that are coming out in different ways - moodiness, clingy-ness. But it's all understandable. We are being very open with them and making family time a priority now more than ever. I actually feel like things with our family are really, really good right now. (And if you have to endure a crisis, Andy is the man you want by your side, let me tell you!)
I had my first round of chemo a week and a half ago. the actual receiving of the chemo drugs is kind of a relaxing experience. My port is a GODSEND - IVs in my arms make me really woozy. I can't stand to look at them or feel the pulling of the tubing. BLECH! With the port, I get one stick for the whole visit. Then I sit in the recliner for hours with my fluffy socks and fuzzy blanket, sipping ice water and reading whatever my little heart desires. (I am going to blow my reading goal out of the water this year!). Thanks to a regimen of steroids (evil bastards) and anti-nausea meds, I don't feel much of anything for a day or 2 after chemo. Just an icky taste in my mouth and some fatigue. But days 3-5 are rough as I come down off the steroids. Then I get an entire week of feeling pretty close to normal before I do it again.
I'm going to sound ridiculous. But I GET A WHOLE WEEK OF FEELING SEMI-NORMAL!!! I really thought I was going to spend the next 6 months feeling nauseous, huddled on my couch. But I can still have a life in between treatments! I can still be with my kids and play with my dog and cook and go to church and have friends over to visit, and, and, and... The amount of happiness I feel about this is crazy.
I'd like to use this blog to keep everyone updated on how things are going with my treatment. I will have 12 total rounds of chemo (1 down already!), every other Friday. Round 2 is at the end of this week. I love hearing from people, so please don't hesitate to email or text or call! I silence my phone if I'm sleeping, but I'll respond when I can. I'm really excited to kick this in the butt and get back to normal life.
After all, it's just cancer. :)
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