Long Time No Talk

Where to begin? Life was crazy through the holidays, then it kept being crazy, then it was too much to report, then... well, here we are 6 or 7 weeks since my last post. So, I guess I'll go in chronological order. 

I had an infusion on Dec. 21. While I was there, I mentioned how bad my chemo brain was and that I was getting dizzy a fair amount. I have heard chemo brain described as a combo of dementia and ADHD and I would say that's pretty accurate, from what little I know about those two things. I'm constantly forgetting what I was about to do, why I walked into a room or what I was going to get out of a closet or the refrigerator. I scan the shelves, hoping something jumps out at me. Daniel SWEARS I have seen Love Actually four or five times and I really, really think he's wrong. I don't know anything about it. Except that Laura Linney dances in a stairwell about something. I really don't think I've seen it. But maybe chemo brain? I can't tell you how many times a day I say, "Oh, I forgot." I'm sure it's as annoying to everyone around me as it is to me. 

WELL, she didn't like that very much. I mean, she didn't say that, but she said I had to go ASAP get a brain MRI, bone scan and chest and pelvis CT scan to check for mets -- i.e. whether the cancer has metastasized and there are tumors somewhere. Merry Christmas, am I right???

I had my brain MRI the next day. In various ways, it was a tough day, but our annual (except for last year) holiday party was that night and I was looking forward to it. I wasn't feeling well physically that day either, but I told Daniel I didn't want to cancel the party. I told my doctor I couldn't fathom waiting until after Christmas to find out the results and asked her if she could find out that day, right after. I texted her as instructed when I finished the test, then I texted her again just before the party started. Nothing. 

So, come 6 p.m. I had no choice but to change my clothes, throw some cheese and crackers out on the table and plaster a smile on my face. The smile was mostly genuine (unless I was left alone for too long with my thoughts) and I really enjoyed spending time with our friends. I stayed up for as long as my body would let me, but couldn't help but think, "Is this the last time that I'll naively get to have fun with my friends before finding out I have terminal cancer?"

The party was great, and the next day, Dec. 23, we set off for Ionia. Then around 4 p.m., just before heading down to our Balice family celebration, I got a text that said, "Congratulations -- the test showed no major brain abnormalities." A huge sigh of relief and instant tears. 

Then, wait -- no MAJOR abnormalities? What does THAT mean?!?! Turns out that means there are areas that show some brain "changes" (she won't say damage) due to chemo (resulting in 'chemo brain'), but no mets. 

I had the other tests the following Wednesday and got the official all-clear on Thursday, the 28th after a very stressful wait in the room where I was reading into everything everyone was saying and was pretty sure it was bad news. BUT, it wasn't. What a week! 

Then HAPPY NEW YEAR! We had a quiet New Year's Eve. Daniel wasn't feeling well, so James and I went to hang out with friends and their kids and were home by 9 or 9:30. Claire is officially too cool to hang out with her parents on New Year's. I guess I'll have to hold onto last year's hang, when we wondered what the heck was going on as Mariah Carey flubbed her own song in Times Square and we stayed up too late after the ball dropped. 

In the first couple of weeks of the month, I had a check-in with my radiation oncologist, who said I was looking surprisingly well and said he wanted me to do some physical therapy. I started that last Tuesday. It goes by quickly and my therapist Michelle is lovely. She's teaching me some great stretches that can help with the pain and limited mobility I have, especially in my right arm and armpit. I'm pretty sore for 2-3 days after, but I'm trying to keep up with my stretches and "homework." I go twice a week. 

Apparently I have something called "cording" which isn't muscle and isn't tendon, etc. -- it's been studied and they aren't exactly sure what it is. They think it's fascia (a thin sheath of fibrous tissue enclosing a muscle or other organ), like that thin clear layer you might find on your raw chicken breast, that somehow forms into a cord-type of a thing. It has been causing pain between my shoulder and elbow when I outstretch my right arm. I was instructed "if you hear a pop and feel a burn, that's a good thing," so I won't worry should that happen. 

My plastic surgeon gave me the go ahead to go back to work. I'll check back in with him in April and, depending on how things look, I might have a MINOR procedure/surgery done to make things a little more symmetrical. But maybe not. We'll see. I check in with my oncology surgeon for the first time in a year in 2 weeks and I expect that to be uneventful. 

I had an uneventful 16th perjata infusion and my LAST ONE is next week. Does anyone know where my parade will be after? I think after that I can get my port out (ya-hoo!) and I go to my blood tests every three months. 

James and I had spent the weekend in Pittsburgh visiting my brother Joe, sister-in-law Tatiana and their son, Clayton. We had an awesome, relaxing weekend. I'm so glad I finally got to visit them! They moved 2 months before I was diagnosed, so I never got a chance to visit before I was in a position where I didn't feel up for the drive (or had too many appointments) to get over there even after chemo. James was great in the car and it was an easy trip both ways. I can't wait to go back.

Although physically and mentally I don't quite feel ready to be back at work, I went for it. Monday was my first day back. My Monday clients are people I cooked for before I had James. In the few months I was on maternity leave, they bought a new house and gutted it, so they had no kitchen. Last year they contacted me and, a year later, they still hadn't found another solution (like all of my most recent clients did in the last year and a half). Their kitchen is amazing now and was great to cook in.

The day did not go as planned in many ways. James woke up with a fever and, since it was my first day back at work, Daniel was the one who had to put work on hold to care for her. I got to Whole Foods (about 30 minutes from my house, but near my clients'), and I had forgotten my clipboard with my shopping list, recipes, labels, etc. Because my phone recently was rebooted, I couldn't get into my software on it. Eventually I texted Daniel to text me pictures of everything because I was already running behind and couldn't spend an hour round-trip going home to get it, but he offered to bring it to me. I went off the shopping list picture he texted me and ran out to get the rest from him (in the pouring rain) when he arrived. 

Little did I know that his car was sounding a surprisingly loud alarm over and over again because it mistakenly thought a door was ajar. The brakes/muffler place next door to our house checked it out, but couldn't figure it out so he needed to get it in ASAP, which required me to get him and sick James back home from the dealer. I kept pushing my "I'll be done by" time until eventually it was nearly closing time. Long story short -- It took me 2-3 hours longer than I anticipated and than it used to take me to make my four entrees and side dishes (with a nosey dog and a cute baby distracting me as well). BUT I DID IT. I spent nearly 8 hours on my feet but I did it. I drank a lot of water, ate probably not enough food and felt pretty well most of the day. Not too many hot flashes and I'm on a little sore today. The second the adrenaline subsided and my butt was in that car seat I could have passed out though. 

I arrived home to streamers and balloons and a marching band congratulating me on my efforts. Ha! This is real life and we are parents of a sick kid and another one who was at practice. Instead we raced around to get Daniel's car to the dealer (who of course charged us a fortune, but that sound had. to. go.), got the three of us to the chiropractor, got James back home and in the bath, ran out to get Claire from practice, unpacked all my work stuff, ate half a bag of roasted peanuts (They were organic -- does that help?) for dinner, absolutely stopped putting away the dishes when James asked me to stop and snuggle her on the couch, put her to bed after she passed out, melted into the couch alone for a bit then, on cue, James woke up as Daniel and I were about to go to sleep. She and I spent a not very restful night in the guest room so Dan and Claire could get a good night's sleep -- she had her first ever high school exams today and he had even more work to cram into today (Tuesday) since Monday was a wash. Thank goodness I didn't have to work today. 

Why am I sharing all of these details? I'm sure all of you -- whether or not you have kids -- have had days like this. They are normal. Holy crap. I had a day that was normal. With work and sick kids and studying kids and groceries and appointments and baths and a fidgety, fevery little kicker next to me in bed who ultimately decided 5:40 was an acceptable wake-up time.

Over the weekend I was telling my brother about this song James LOVED when she was about 1 1/2. It had been a reference track for a spot Daniel was working on and she would ask him to replay it by pointing to his computer screen. We have video of her standing on his lap so excited it is on, shaking her fists and trying to clap along. As I was pulling up the road to my clients' house, about an hour after I hoped to be and feeling nervous, frazzled and tired before I even started, I switched on the radio and it was on. "Dog Days Are Over" by Florence and the Machine.

I don't know why she wrote that song or what it's even supposed to be about. But it seemed to be just about perfect yesterday. Two years ago, a day like yesterday seemed like one of those dog days. The stress and the worry and just an all-around tough day. But now I have seen tough days and yesterday wasn't it. Exhausting? Yes. Busy? Yes. A little harried? Absolutely. But that's life. And I'm living it.