I've been neglectful in my updates. (Sorry!) I had big plans to regale you with infusion center stories of women far braver than I, and tales of victory that include crushing cancer and giving us a reason to cheer. Alas, this round has not been very forgiving, but rather a little on the brutal side.
I don't like to write about sad things or dismal circumstances. It's not how I like to roll through this world. I am convinced that there are ironies and sarcasms about cancer that could be entertaining to even the most pessimistic of readers. Gloom and doom is not fun for anybody, least of all me. However, so many folks have reached out to ask, "What's going on?' and poor Marek is inundated with requests for news. I've been waiting for good news to share so we can all feel good as we roll into the holidays. As always, the rollercoaster continues. We are up!!! We are down... We are back up!!! and so on. Here's the latest.
In the beginning of October, I was still sort of reeling from brain radiation therapy. Radiation is insidious. It doesn't feel like much when you are getting it, but it sneaks up on you and continues to assault you long after treatment is done. It's kinda mean. I was dizzy, foggy, tired and it just seemed to worsen. Indefinitely. At first, I was cavalier. Easy! Look! I can still eat with a fork! As time wore on, it reminded me not to count my chickens before they were hatched. The effects continued to accumulate and I got humble.
After brain radiation therapy, my oncologist had a CT scan of my body done to see if there had been any changes since diagnosis (about a month) and found that the cancer had indeed grown. We hadn't started systemic treatment so it was to be expected, but a little disheartening. Part of this growth was affecting my right kidney which started backing up (hydronephrosis) along with some other concerning changes. Those changes have resolved since I started the chemo and systemic treatment. Kidney enzymes are back to normal and lab results looking solid. (Woohoo! We're up!!!).
However, I was still not feeling well. The tumor in my eye began to die causing increasing blindness and made it difficult to drive. I had some symptoms that I thought were associated with the kidney thing so in my usual style, I encouraged myself to drink more fluids and suck it up. My inner voice often goes something like this: "Cancer is tough. Chemo is tough. Dying sucks worse, people are counting on you, so quit complaining and suck this up." As it turns out, the kidney hydronephrosis contributed to a simple urine infection that was affecting my blood pressure. I was unable to eat or drink or function and things started looking a little gloomy on my end. I was going blind. I was losing weight. and I was losing faith. (Down goes the rollercoaster.....)
I just finished two weeks of antibiotics and what a difference that makes. Blood pressure is more stable. Brain swelling has gone down and my vision is improving. I had a follow up appointment with my retinal specialist who was happy to report that the cancer lesion on my retina was gone. GONE. Smoked. Decimated. Non-existent. (HA! Take THAT!). This is great news because it was one of the larger masses found in my brain and if it is gone, then it's highly likely the 100's of little ones are gone too. The eye tumor left a scar so my vision is a little wonky, but corrective glasses look like they will help some of that. Truth is, I was headed this direction anyway thanks to the Earth whizzing around the sun at breakneck speed. My new librarian look will hopefully make me feel smarter and help me avoid more overdue charges. (And we are back up! woo hoo!)
Many many friends have stepped up to bring food, drive me to chemo and just generally lift my spirits. The random text, the impromptu visit, the Facebook post about their ascent of Chimborazo (!!so cool!!), and the scores of "#LiveLikeTori posts and T-shirt pics that make me laugh and giggle... all remind me of a life I need to return to, and make this journey so much easier. We get countless offers of "whatever you need, just ask!"
We don't ask.
We know this isn't fair, because it robs everyone of that opportunity, but allow me to explain why this is important. We are holding our own just like every other family trying to make ends meet and empowered by the fact that we can still meet our own needs. This is a good thing we can teach our girls. When the going gets tough, our family comes together to work through it. As a nurse, I have seen stories that are dismal. Families losing their jobs and their insurance due to chronic, long-term illness. I've seen the psychological affects of these hardships and the sad events that follow. The long-term effects are worse. They are cumulative and destructive and will unravel the stoutest of families. I am bracing for tragedy, and at the same time, looking for any positive indication that we will make it through this, unscathed. Our ability to do for ourselves is our best measuring stick and an opportunity to feel like we are not losing the battle.
And it's a balance, because not every day is a victory, and we have to work for the small ones.
Here is the point I would like to make. Treatment is difficult. This mountain can only be climbed by me. There's no other way. However, the countless offers of friendship, of food, of rides, of love and kindness empower me to do this job. I KNOW there is a vast safety net of friends and family holding us up in their hearts and prayers. I KNOW my girls are safe and living seemingly normal lives through spending times with friends, playing soccer, and working on their studies. I KNOW Marek will push himself to work hard and that people are out there ready to catch him when he falls. Because of this, I KNOW I can let go of the reins. I KNOW I can cry, and pound my fists on the table, and scream obscenities to the sky because people are there for my family. I KNOW I can sleep through an afternoon because I need to heal and someone will be there for my husband and my girls. I KNOW I can survive this because so many amazing people are on perpetual stand-by for us. It empowers me to take care of myself. It INSPIRES me to not give up. Just one person makes that difference. One person, everyday... "Hey, I haven't forgotten. and I'm here."
So if we don't ask, it's not because we don't need you. It's not because we don't appreciate you or that we have "plenty of other friends." You are a link in the chain that is holding us up right now. You are increasing my likelihood of survival (by hundreds of odds), which is recently relegated to eating (anything I can keep down), drinking (twice as much as I need due to limited absorption) and sleeping (the only part that doesn't require a monumental effort). These things traditionally don't assign me a sense of "achievement." I mean eating, drinking and sleeping.... Really? But those are today's challenges. If I don't meet them, the finish line looms closer. No one can do it for me, but the fact that so many of you are holding us up, ready to help, gets me through one more day. It keeps me from dark places, and from giving up. It helps me rise above the nature of my circumstances and earn the goodness that literally flows through our front door. Please don't stop "being there." It's working.
And when we need (more) help, and we will. We will call. I promise.
What's ahead? Good question. I will see my rockstar oncologist tomorrow and will drill him for answers of the future. Currently, I am on treatment number 7 of 12. Tomorrow's treatment is a doozy. It's a triple header, and I get it every three weeks. I get three drugs that truly suck the life out of me. Much of doing the work is showing up, taking your poison and then spending a week digging yourself out of the burning ashes cancer and chemo chuck you into (eating, drinking and sleeping). It's like getting knocked out week after week only to get back up and ask for another. It's a bit of a psyche war. Let's not forget the the pre-meds I got before my weekly beatdown. I get steroids, Benadryl and Pepcid (all IV) prior to treatment to protect me from unfavorable drug interactions. The analogous effect is like sucking down a couple of Red Bull and Vodkas before getting the tar knocked out of you. First rule of fight club: We don't talk about Fight Club.
Thanks to some poor decision-making in my twenties, I am well-trained for this! I've picked myself up off of plenty wax room floors after some well-earned, celebratory debauchery to return to the land of the living. Chemo is just raising the difficulty level. Just for fun, I'll add in some real-life responsibility, kid's soccer games, grocery store trips, and maybe a movie in the midst of the week just because it makes me feel sassy and rebellious. I really believe stubborn and feisty mixed in with some sarcasm wins this race. The 90 year-old crotchety patients always go home from the ER (much to their families dismay). That's why they're 90. I'll settle for 51.
So the update is we are holding strong here at camp Robinson. The next six weeks should get pretty exciting with the holidays ramping up along with chemotherapy symptoms. Sometimes I think Cancer levels up on me on purpose. Okay, I'm tough but seriously? At least Egg nog has hit the stores. There's gotta be some protein in there, right? I'm not especially excited that I will reach my immunity low point (nadir) right around the time the flu starts making it's rounds. Flu is like bubonic plague to a chemo patient. Feel free to bath in alcohol sanitizer before you visit and don't be put off if I don't lick your face.
I will be locking myself up for the next while to stay out of trouble or specifically the hospital, so get out there and climb a mountain, surf a wave, kayak a river, ski some sick line, fly a plane, jump out of one, (whatevs) and send lots of pics. If I can't live my own life... I'll live yours for awhile, if you don't mind. Thanks for reading.
