No news is... good news?

The past five weeks have been an absolute whirlwind of hospitals, doctors' appointments, and tests. So many tests -- looking for my cancer. 

Over and over, I've found myself feeling both completely disconnected from so much of my life and also grateful that I have the ability to disconnect right now. My jobs have been incredible blessings and my family and community support has been amazing. I've been living in a strange sort of limbo but I think it's time to start moving beyond this place. 

Yesterday was a BIG day in my recovery. It was easily the most significant day I've had since this all started.

First of all, I completed my first of 3 radiation treatments. I don't even have the words to describe how amazing the staff was there. They were quick to get me, they knew that my back had been a little sore at my fitting the week before so they had accommodated that for me, and they carefully explained how everything would go and then made sure there was music I enjoyed playing. (I went with Christmas music because my lack of driving lately has meant I listen to a lot of sports radio instead.) First they do a scan to make sure everything aligned correctly (this is not the time to be off, even by little bit!) Then the actual radiation itself takes maybe 3-4 minutes. 

I arrived at 9:05, did the treatment, saw my doctor and asked questions (including getting the clarification that this is not the proton therapy I thought it was but actually stereotactic radiation.) I explained that as a former journalist, it's important to me that I have these little details right and he said, "you must be an old school journalist" and we both laughed even though there's nothing really funny about any of that.

But I digress. We did all of that and still walked out at 9:55am. I am legitimately looking forward to going back tomorrow and Friday. After 5 weeks and a major surgery, it feels so good to be doing something proactive and focused on treatment. So good!

Our next stop was a follow-up with my neurology team, Sarah Beam and Dr. Tsung. I was officially medically cleared to "resume all normal activities" to the degree I feel up to it. This includes working, driving, and sadly I even have to go back to things like vacuuming and laundry. She did recommend I ease into things and not do all the things at once and that is advice I plan to follow. She also kept me on the anti-seizure med for now. I haven't had any seizures (a fairly common effect of brain surgery) but there is some extra risk from radiation and I do have a history from my teen years. The meds aren't bothering me at all, so I'm happy to keep them on board just a little longer.

Sarah is also a former speechie (she did radio) and a former speech mom and at this appointment, she let me know that my oncologist is also the mother of a standout speech student from Richwoods (also from a few years ago) so I went to my third and final appointment of the day armed with that very interesting information. It was a fun connection to make.

And then I learned that my last scan, a PET scan, was CLEAR.

(How's that for burying the lead?)

Her's what we know:

1. My cancer (metastatic melanoma) started somewhere and then morphed into the melanoma. They think they got it all in surgery so the radiation is mostly to get anything microscopic or try to prevent a recurrence.

2. We don't know where that somewhere it started actually is. Yes, this makes it a rare form of this particular cancer. I like to be extra special. :) All major organs have been ruled out, as has a B-RAF mutation. 

3. Nothing about the treatment plan is really affected. The good news is that whatever it is, it's still microscopic and can't be detected, even with the miracles of modern medicine. Immunotherapy should still get it but not being able to see it means we won't know for certain that treatment is working because it will be more difficult to track progress. But that is the only downside and I can live with that. I'm confident we'll have other ways of knowing, not the least of which will be all the MRI's I'm going to have in the months (and years) ahead. 

Overall, this is the best case scenario I could imagine having after my initial diagnosis. I am kind of overwhelmed knowing this is actually happening this way, and to me. I am sad for anyone who gets different news and I am more aware than ever of how often that happens.

I get ALL of next week off from doctors' appointments (WOO HOO!) and then I go back to start immunotherapy sometime the week of January 7. Those will be monthly infusions that take about 30 minutes and shouldn't have any major side effects. I will do those for at least a year and then we'll go from there!

Before brain surgery - this is the bigger of the two tumors on my left side.

12 hours after brain surgery. You can see the cavity that's left behind. It just fills with brain fluid now. Also, you can see in these two images how the midline of my brain was being significantly pushed to the left (well, right.) Now it's correcting, and you can even see more difference on my most recent MRI.

When I first went to the hospital, it was presented to me that brain tumors would be my worst case scenario.

Now, standing where I am, I couldn't disagree more. Those tumors were a blessing in my life. They alerted me that something was really, really wrong in my body and we still don't know what that something is but we have the ability to harness the power of my body's own, otherwise very healthy immune system to fight back.

I've had the opportunity to reassess everything my life and determine what brings me joy and makes this crazy life worth living.

Yesterday, I had the chance to thank Sarah and Dr. Tsung. They saved my life and they made it possible for me to realign everything. For that -- especially at this time year, I am grateful beyond the ability to fully express the depth of my gratitude. I am humbled to know that people like this exist.

                          Two of the people responsible for saving my life. It's finally really sinking in.

Yesterday was a top-tier kind of day.

Oh Deer

Well. It's been more than 4 years and my attempts to blog more regularly have... well, failed.

But then Election Day happened and after voting and grabbing lunch, I went to the local urgent care and earned myself a quick ambulance ride to a hospital in Peoria, setting off a chain of events that would ultimately end with me being diagnosed with 2 brain tumors and sent home to wait 9 days for surgery. Before, during, and then after surgery we were told it was most likely/was melanoma. (Just to be clear, this was a surprise to a lot of people except us. We knew for a while, though having it confirmed still hit a little differently.)

I didn't see any of that coming and it has been... a lot. So now I make my return to blogging on perhaps the most ironically named blog ... ever. :)

But I want to start back up today telling you all about my dad and how he has been so present - but at a respectable and comfortable distance - throughout this all. And in a way that is hard for me to fully explain or talk about but I will try.

When I came home from my first 3-night hospital stay, it wasn't long before I saw a buck in our yard. I see deer often out here but the bucks show up a little less frequently. I am honestly not sure of the last time I saw one but it feels like it's been a few years. It's only really happened a handful of times, including when my dad died.

But now, this buck walked through my front yard -- present, watchful, it almost felt like he was standing guard or just checking in on me. One night, my sister was here visiting and saw him outside.

I haven't seen him for a few weeks now, (not since the surgery I think) but the day I got the first good news about my treatment plan, my sister saw a different buck run through the grass when she returned to work after running into me at lunch. You know, just in case we weren't getting the message. 

I have not had a visit or a dream about my dad even once since this began and for about a week, that was the single piece of evidence I clung to that I will be ok. Because if that wasn't the case, I think I'd know. Right before my grandpa died, I had one of the most vivid dream visits I've ever had in the past 16 years in which it was very clear that my dad was waiting for my grandpa. In that time, there have been a handful of others, usually fairly randomly. But now, it's radio silence and it's so comforting to have that. I think he knows I need that. Frankly, I'd be so unnerved if he showed up now. The significance of his distance is not lost on me. He's here but holding space for me. 

My mom has done the same in terms of holding space. So have my in-laws and Edgar's siblings and my sister. Really, most everyone in my life has been this way. (A few of you have been a little overly-alarmist but I understand and appreciate it more than you know!)

My husband has been my rock. I could write an entire post just about him but suffice it to say that I'd be completely lost without him and I don't know how anyone gets through something like this without someone like him. The love and security he has shown me are next level. 

On the day of my first consultation, I was surprised to learn that Illinois Cancer Care is a stand alone institution that is filled with "sun" imagery -- it's in the logo, the "Sunshine Shuttle," an award that is given to employees, etc... The image of radiating positivity is not lost on me. Or the fact that when he was dying, I told my dad that I would always look for him in anything sun-related. At that first appointment, the receptionist recognized me as Dave Tebben's daughter right away. She went on and on gushing about him while I had my vitals done. At first I was a little taken aback at having been recognized so quickly, but I quickly realized what a gift she was giving me and my attitude changed. That night, it happened again as another stranger stopped to talk about my dad at a high school basketball game. You know -- in case I didn't get the message the first time. :)

During a routine physical, my dad was diagnosed with non-Hodgkins lymphoma at the age of 50. It's hard to ignore the parallels, they're literally right in front of me. Through it all, my dad kept a positive and upbeat attitude. I know he did chemotherapy and I know it must have been hard, but we never saw him struggle. That's not always my default so for years I've wondered if I could do the same but now I know -- I really don't know any other way to be.

As of Friday, my insurance has approved my proton therapy (stereotactic radiation.) Those three sessions will be done this week and wrapped up on Friday. What a gift this is! Then I'll begin immunotherapy. I'm hoping to have at least the week of Christmas off before starting those but we'll know more after this week. I was worried heading in to that first appointment the I might be told there was nothing they could do. Instead, my oncologist told me all the reasons she felt optimistic about my prognosis, not the least of which is that I have been healthy up to this point. She said, "there's always a plan" and I felt so much relief wash over me. We still haven't found the primary source of my cancer, which is a strange place to be. We hope to have that answer later this week and I am comforted in the knowledge that it may not affect much about my treatment plan (outside of some logistical things) but it is causing me some anxiety right now. We've ruled out a lot of scary possibilities so I'm focusing on that. Still, it's weird how much cancer can feel like a game and you're just hoping you don't get a particularly bad hand. And you feel so much guilt for anyone who does. There are a lot of people -- and I know many of them -- who have it so much worse than I do. 

That is not lost on me, especially now.

I could choose to be sad that this has all happened but I honestly don't have it in me to be sad. We never know what we're capable of until we're facing it and this is just one more example. I feel great! Nothing hurts or is bothering me -- and my cognitive functions are almost back to where they were before surgery. The only thing I really struggle with -- ironically -- is typing. My body seems to have forgotten how to type with my right hand so that is frustrating because I used to be so proud of my typing speed and now it's mostly hunt and peck. My handwriting isn't really up to snuff either (it's one of the reasons I keep putting off all the thank you's I need to write!) but my husband jokes that even my "bad" handwriting is still much better than his so there is that. :)

I have every intention of returning to coaching and teaching in January. I recognize that all of this has had some effect on my speaking abilities, (more irony!) but I'm back to doing the NYT games every day as just one way to sharpen my brain again. My PhD is on hold while I take some time to decide if it's still my dream or if I'm willing to let that be. For now, it's an option I'm keeping open. I can't lie, the idea of getting my doctorate *after* brain surgery seems pretty badass. But I'm also not sure it's still a priority in my life. So, it's on pause and we'll make that decision later.

And in fact, everything in my life has shifted. I now see miracles and heartbreak and happiness and gut-wrenching pain in places I never have before. I let stuff in and embrace it and *feel* it rather than keep it at arm's length in denial because the empath in me that couldn't handle it before has now changed. I am letting go of people (only a few) and letting people in (so many!) who want to be a part of my story. I am making choices about the things I do want to do and the things I no longer want to do. Sometimes those choices are more about what is the right thing to do for others and those decisions aren't always easy but I'm making them anyway. 

I have some guilt about the friends who have fought their own cancer battles or those of their loved ones and I maybe wasn't as supportive as I could/should have been. I know now that I was mostly in denial but that doesn't make it ok. I will work every day to do better.

I don't know how long this "new me" will last but I hope she sticks around a while because she is wonderfully courageous and unburdened by expectations and it is so freeing. 

In that spirit, I'm going to share some photos of me taken in the aftermath of brain surgery. I want to be open and vulnerable about what I've been through. I've been so blessed in my recovery but I want you all to also understand the very real trauma I've endured. I'd never had any kind of surgery, so this was a doozy to start with! I'd never really had anesthesia (yes, I'm still bringing up the "no epidurals" in childbirth thing but in my defense, it's relevant - lol!) or gotten through a 5.5 hour surgery or had my head shaved or a piece of my skull cut out and then put back. The first 36ish hours were hellish, in large part because of some things in our healthcare system and having to share a room on top of a struggle to get my pain under control that was exactly as bad as I was warned it might be. My recovery didn't really start until I got home and I have some thoughts about that to be shared another time.

But then, we turned a corner. Every single day has been better than the day before and they've all been pretty good since Thanksgiving. It's been quite a ride and we're just getting started. 

Getting my head shaved at about 6:00am the day of surgery. 

No idea why I'm laughing but it says a lot about my attitude going in to this. Right after this I went for an MRI of my brain so we had the best possible information on everything as I headed into surgery.

               

Post-surgery. Don't be fooled, those moments of rest didn't happen much. The blood on my head is, I think, from where the pins on a device that held my head still were. It washed right off once I thought to try washing it off.

Photo taken less than 48 hours after surgery was done as I was learning I could go home. I ended up going home just like this (with a hat to cover up this lovely hairdo!) and then taking the BEST shower of my life that afternoon! I used a shower bench for just a few days before I ditched it and just stood up instead but it was worth every dime for those few days! My ability to complete sentences returned almost immediately after surgery and doctors did a 2am MRI (roughly 12 hours post-op) and said the next morning they thought they'd gotten all of the two tumors, one of which was the size of a walnut.