Who Am I?

I had the very strange experience this week of looking at a pre-cancer picture of myself and not recognizing the person in the photo as me. So much has changed - my hair, my weight, my eyebrows/eyelashes, my activities that defined my days, my energy, my outlook on so many things, my innocent belief that I'm invincible against horrible health things that only happen to "other people". In a lot of ways, I'm not the person in that photo any more. It's disorienting.

I know ultimately, I'm the same person deep down, and things will go back to normal. But I've been living in crisis mode for so many months now, that it's hard to remember which direction is up. I just want to put my life back together. I want to not feel awful any more. I want to not feel so exhausted and so incredibly lonely.

By the time this is done, I will have spent 6 months of my life dealing with cancer. That's a long pause. It's a long time of feeling not like me for a majority of that time. I'm so scared that I won't be able to get back to me. That my husband won't get his normal wife back, my kids won't get their normal mom back, that this whole experience will have changed me into someone that I don't recognize. Permanently.

I know I have only 3 chemo sessions left. But today I am mad. I'm so mad. I don't want this. I didn't ask for this. Or do anything to deserve this. My kids don't deserve to have a mom who's in so much pain and nausea that they can't even sit on the bed next to me. My husband doesn't deserve to have to act as a single parent every other week. THIS IS NOT FAIR. I HATE THIS. I JUST WANT TO BE DONE WITH CANCER. I want to be me again.

Ugh. I don't even have the energy to end this post on a positive note.

Light the Night

Tonight I'm equal parts exhausted and relieved that I seem to be through the worst of the side affects from round 8 of chemo. This round, rebounding from the steroids was extra hard and I had intense pain all over my body for about 48 hours. I am officially in a fight with dexamethasone (steroid) and I think we need to break up. Permanently. Forever.

Nine weeks from tonight I'll be getting ready for my last round of chemo. Nine weeks. I can do this. I don't want to do this. But I can do this.

I've developed psychological nausea in response to going to treatment and to receiving one of my drugs, which is bright red. My doctor offered me some extra meds to take on my way to chemo to keep me from feeling sick. I feel like I'm just taking pills upon pills upon pills. Pills to help with the side affects of pills to help with the side affects of pills. Ugh.  Guys, I USED TO BE SO BORING! I took an antidepressant. That was it. One tiny little blue pill, minimal side affects. I want to be boring again. I miss boring.

Anyway, the purpose of this post - Milwaukee's Light the Night Walk is coming up on Thursday, October 4th. I've created a team (Kerry's Cancer Crushers!) and would LOVE for you to join me at Veteran's Park that evening. I'm so excited to be surrounded by other people who have walked or are walking this same path I am. Plus there's the added bonus of raising funds for LLS - a great organization helping patients and families in my current situation.

Click HERE (best from a computer, the mobile site isn't great) to join my team, or if you are able, make a donation. If you have troubles, shoot me a message and I'll help get you signed up.

We're STILL Doing This

I'm more than halfway through chemo. And while I'm glad, I'm also a whiny brat who just wants to BE DONE NOW! I'm to the point that on my good weeks I don't feel like I'm sick beyond the usual fatigue. So it feels like torture having to turn myself in for another treatment every two weeks.

That's dramatic. It doesn't feel like torture. But it is unpleasant and something I definitely don't ever want to do again. Five more treatments. I can do this. I CAN, but I don't WANT to. Isn't that life, though?

I've gained a lot of weight through a delightful combination of steroids, stress eating and delicious desserts brought by caring friends. I'm not sorry - I love brownies. But with the absence of consistent workouts, the pounds are piling on. I know this is better than losing weight uncontrollably, which I was also doing in the beginning of this whole business. But now that I've gained back everything I lost and kept off a few years ago, I'm anxious to tackle it and get my body back into shape. Between that and my hair situation, I think my self-esteem is at an all-time low.

This is not a cry for compliments. Just where I'm at mentally in this illness/monstrosity. I know it will get better when I can start running/working out consistently again. I want to look back on this a year from now and be like, "yeah, took care of that business, let's do a triathlon!" But for now...this is what it is.

I found out from my labs this morning that my immune system, which has up to now been hanging on by a thread, is beginning to tank. It's expected. But it's also coinciding perfectly with my kids going back to school in 2.5 weeks. This has me very nervous, as a hospital stay is about the last thing I want (next only to ever seeing the doctor who did my second port surgery again). Hand sanitizer is the name of the game for the foreseeable future. SANITIZE EVERYTHING! ALL THE TIME! The kids love me...

So this is where I am now. Just very "eh" about everything. We survived the summer - today was my last treatment with my kids home on summer break. Five more and I'm done. It doesn't sound like a lot, but as I'm staring down the barrel of 5 days in bed/on the couch, it sounds insurmountable. I know I'll take it one day at a time like I always do, but, dang - CANCER IS ANNOYING. Chemo is annoying. Everything is annoying. The end.

Delightfully Normal

I have had a delightfully normal day. It's funny how quickly I go from feeling awful from the chemo to feeling back to my normal self. This round's recovery was one of the easier ones. I didn't get the emotional lows that I've had with earlier treatments. The horrible body aches I had after round 4 were much more subdued. I was able to take short walks most days. The fatigue even seems to be improving a bit.

When I woke up this morning, I was completely me again. I took the dog for a long walk before it got too hot. I did a load of laundry and ran the dish washer. I made myself an omelet for breakfast. I went to church. And I was SO HAPPY to do all of these normal things. I want to remember how grateful I feel on my good days to just be able to do what I previously did without thinking.

Somebody slap me if I ever again complain about exercising. To move and sweat and be able to breathe is so amazing! I can't believe I viewed it as a chore before cancer. I now look forward to my good weeks because I know I'll be able to exercise again.

And laundry! To be able to do my own laundry is the best. Ours is in the basement so it's a lot of trips up and down the stairs. I know it's going to be a good day if I wake up ready to tackle laundry.

I suppose my point is that all the "normal" every-day stuff I was doing without even thinking about before I got sick, in the right light, it sure looks like a huge blessing. I'm not saying I'll love doing laundry forever. But when the alternative is not being able to get out of my bed, being able to wash and fold clothes starts to look pretty good!

I hope I can hang on to that appreciation of the mundane parts of my life once I'm done with treatment. While I "know" that having a family to cook for and clean up after is a blessing, it's nice to really KNOW it. And appreciate it. And to appreciate my body and what it can do. I'm going to RUN ALL THE MILES as soon as I'm capable. Just because I can!

"No Evidence of Lymphoma"

I just received my 5th treatment out of 12 today (only 7 left, almost halfway!). I have had the best chemo dates on this "adventure" and today was no exception. My two great friends from college accompanied me this morning. We laughed the entire 3 hours. It made the treatment go by quickly and kept my energy and spirits up well into the afternoon.

I was also able to read the full results of my PET scan from last week. My two very favorite phrases of all time: "Complete response to treatment" and "no evidence of lymphoma" were prominent. (!!!!)

What this means for my remaining treatments is:

1.) We know it's working. The cancer is responding to the chemo and dying off quickly. See ya, sucker. I never wanted you here in the first place! I should be done in October, which sounds closer and closer every day!

2.) I will still have 12 total treatments to ensure that we get any roaming cancer cells and keep them from taking up residence someplace else and regrowing.

3.) This is the doozy for me - Due to the great results, they are taking me off the bleomycin which is one of the chemo drugs I was on that is known to cause pulmonary toxicity (in English, it's bad for the lungs, which I need to live).

My 4th round of chemo was my hardest physically. I had horrible body aches and swollen lymph nodes all over my body for 48 hours. I could barely move or sleep, and pain meds weren't helping. While this is a normal side affect, it was extreme and I'm praying it's not a side affect I have to experience again. However, once that abated, my energy soared! I was able to rejoin my exercise group, attend yoga, visit with friends, and get back on the mat for my first jiujitsu class in months. It was a GREAT week.

I hope to never take my energy and health for granted again. I'm so grateful on the days that I have the stamina to do these normal things. I played with my kids, cleaned my house, walked my dog, went on a date with my husband, went to church with my family. A normal day in the life, usually, but not for me lately. And getting to be normal is my favorite thing right now! Here's hoping that recovery from this treatment goes a little more smoothly than last time and that I can get back to those good days really quickly!

The Diagnosis

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.

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.