Up, down, up, down...
In this blog post...
Mouth sore hell
Evolution of this blog post:
1. Talk about all the sunshine-y stuff that's pulled me through the hail of pain for 28732 days and counting. Post pictures of the In-N-Out and Krispy Kreme my wonderful, best-ever parents drove up today to combat my stubborn nausea that's decided to camp out in my chest and stomach. They would eventually bring up Japanese goodies and Din Tai Fung on another trip to make me smile!
2. 180°: realized one part of the diagnosis that reveals I have a smaller chance of long-term survival than others with my NHL type. Cue: freakout. All the thoughts of how long am I going to live? What are the numbers? Yeah, everything you're NOT supposed to do. Then I shoot off three desperate emails: one to my own UCSF doctor and two to doctors at other institutions. Abridged version: am I going to live long?
3. 180° again: tell myself stop it. Shut up. You've got this. Doesn't matter what the numbers are. Fight, fight, fight! (I actually said this to myself in the mirror several times.)
4. FF to nighttime: saw the final part of our house renovation actually done and jaw dropped. Tears welled. Back to feeling blessed.
Then I realized, okay, this is my post. The constant fluctuation of feeling through the days that have bled into nights into midnights into mornings into some afternoon... only broken up by different versions of hell as defined by whatever symptom is hitting me at the moment. There is no such thing as sleeping at night; it has been sleep whenever my body throws up the white flag for an hour or two at a time to allow itself to rest.
In fact, this blog post has taken days to write. I started this on Tuesday. Now it's Sunday night almost midnight (I can't tell the time on my laptop because I broke part of the screen over the weekend UGH) and my chemo side effects have flared up after a WONDERFUL Wednesday and Thursday. I felt so good those days that I was able to have friends over and go out the next day into downtown SF for the first time in weeks. Weeks of just the various UCSF campuses and home. Here's a quick, random audio blog I recorded in the Lyft on the way to lunch.
Lunch was with a distant cousin, Christine, who has such an amazing tale of her own. She was studying to be an anesthesiologist when 13 years ago on a trip to New Zealand, she suffered a terrifying accident where she hit her head and broke her hand. Thousands of miles from home, an MRI showed a brain tumor. She survived her cancer after a hard fight and remains cancer-free, now a mom of two adorable boys who is still pursuing medicine + research. It was really wonderful to be able to connect with her in person. We shared tears as we discussed our own journeys. The "cancer bond" is an inexplicable one. You just get each other because you've had to experience similar traumas.
As for why we were able to have some friends over at our house, it's because of what I mentioned before: Our renovations are finally done, save some minor touch-up work. Let me repeat this because I swear the renos are partly why I got cancer lol.
Our house renovations are finally done.
Man, does that feel therapeutic just to even write out. I spent the bulk of 2016 trying to handle living in the dust, dirt and noise. There's been a portapotty sitting outside our house/garage for close to a year. We've had to move around within the house countless times. No more! Thank. You. Universe. But a much bigger thank you to my cousin Nickie + her man Sol, two professional architects who took over the project when I got diagnosed. They went above and beyond to help me and my family out and I will never, ever forget their kindness.
Now I'm in a hotel room for a few days because there's still a LOT of minor touch-up work to be done. It's a bit inconvenient as I have to get my port installed tomorrow and I might be in pain afterward (crossing fingers I don't!). I may not be able to do the minor surgery anyway because my white blood cell count is extremely low, which is typical in the week after chemotherapy. I'll have to get my blood drawn and tested Monday morning before doctors decide whether they'll put in the port.
[[MONDAY UPDATE: Nope. Yet again more change of plans last minute leaving me feeling like things will just never progress. I had an ECHO cardiogram or ultrasound of the heart done last Tuesday and yet it took this long for people to determine that there wasn't enough information to allow for the port placement. I now need to undergo another CT scan with dye this Wednesday. To be frank, I am really upset. Why did it take so long to make this determination? I was otw to the port placement location with Tim when we got the call to turn around. And is ANOTHER SCAN really necessary? I'm nervous about the amount of radiation I'm undergoing. Sigh. Does this mean I might not be able to get a port and will have to get a PICC line again? I'm so so so over all of this.]]
Mouth sore hell.
Speaking of the week after chemo, it truly is hell. I thought I'd gone through the worst of everything with the adverse reaction to the IVF/cancer combo + other chemo side effects. Boy was I wrong. The hell known as mouth sores hit me so hard that I've probably been the least positive the last 72 hours than I've been the entire six weeks since my diagnosis. There are dozens of sores everywhere so I can't eat, drink, swallow, talk without feeling extreme pain. I MUST find ways to consume calories and nutrients because I need to be strong heading into Chemo Round 2, especially since this is the start of the more aggressive regimen R-EPOCH.
In these past 72 hours, I've felt like "giving up" more than once. I don't even know what that means. All I know is I just felt no fight left in me. The phrase "it'll get better soon" held no more truth to me because I'd heard it so much in this last month but every new day brought a new pain. I wasn't sure I wanted to admit this because I know family and friends read this blog... but I'm embracing this as what will be the absolute lowest point for me. You really don't know what you're made of until you hit the bottom. I can say that I have never been tested like this in my life. I've had times in the past where I had to overcome a bit here and there, but never a time where I felt like I'd conquered a hill only to realize that there's a much steeper hill 10x longer behind it, and then an even steeper hill 10x longer behind that one.
Sometimes it's easier to just give into that hopelessness. Feel sorry for yourself. Ask, "Why me?" over and over again. Bury your head in your hands and sob.
I'm admitting right here and now that the only reason why I was able to dig deep and climb out of the pity abyss was family. My parents. My sister. Tim. They're there when I need it. There when I don't ask for it. They give me space when I want it. And most recently, detecting my lows, they've reminded me the power of positivity. They tell me how much they love me and it's in those moments I'm reminded that I'm not fighting for myself, I'm fighting for them, too.
Love makes you dig deep. Love for yourself is so easily limited (by you). This is the #1 lesson many of us need to learn: love ourselves more, harder, unconditionally. Until I can achieve this, it's my love for those around me that propels me to snap out of the haze and press reset.
Look at all they do for me. Go with me to every appointment. Cook whatever it is I want and/or can stomach. Buy me whatever it is I need. Hug. Love. Joke. Smile.
Time to confront what multiple cancer survivors have warned me would be the hardest part: losing my hair.
It has already begun to fall. I guess it helps me mentally that I'm used to seeing a lot of hair fall out any way, but there is a new sensitivity to it. This means I'll have to "do the deed" and shave it all off sometime in the next few days. I've cried about it. I hear there's grieving process, but I look forward to just getting it all over with so I can confront all the emotions. Tim bought clippers and we have them here at the hotel. It's happening...soon. I still haven't been able to fully accept it yet.
I did take one step to try and cut the shock a bit. My mom and sister cut my hair to chin-length during our Lunar New Year celebration. It feels a lot lighter and seeing the hair fall is less traumatizing when it isn't in bundles of long strands.
Wish me luck.
PS: This has all been happening against a truly depressing backdrop of what's been going on at the White House. Politics and parties aside, there is an obvious driver of hate at the helm (#stoppresidentbannon). It's terrifying, maddening and depressing. I've felt especially useless sitting in my chemo-induced misery when I'd rather have been out at SFO documenting the protests of the immigration ban.
PPS: Have to leave on a positive note. My sister's pug Pumbaa is much bigger now but just as cute, if not cuter! This is the kind of energy I need right about now ;p...