All I can Do is Smile


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Round 1 in the books

I’m on my way to the upswing from last week’s infusion, which has shown to be a little easier than the first week’s. The nausea is still ever-present — where I was told by my doc I’d only feel that way for a few days after the infusion. Ha. I am on Lexapro, which does list a side effect of nausea so I’m meeting with my psychiatrist tomorrow to go over the best mixture of drugs while I’m on chemo.

And added new side effect not yet experienced with chemo: mouth sores & an aversion to certain tastes. (So long, spicy food…) You can’t imagine how inconvenient these little fuckers are. I’m nice enough to spare you any photos, but imagine really, REALLY chapped lips on the outside, and like you bit all parts of your tongue and all sides of your mouth on the inside. That has meant a lot of soft foods (THANK YOU OLIVIA!) because just the act of eating can hurt.

I’ve got this stuff called “Magic Mouth” (not kidding, that’s how I order it at the pharmacy) and I use it at night, so I can get my night guard in. It’s essentially lidocaine in liquid form (no swallowing, just swishing).

Other than the severe constipation and … sorry, I seem to be out of symptoms at this point … I’m actually doing quite well. Now that I know SOFT foods, that’s helped a lot in the mouth pain department. I was losing so much weight that Patti (Oncology RN) told me one trick they tell their patients is to swap out milk for heavy cream. I make the best cream, banana, chocolate peanut butter protein shake you’ve ever had. If you’re looking to gain a couple pounds…

Of course, I can only take that shake in small quantities, since I’ve been reminded I have no gall bladder. (Seriously. I forgot I don’t have one of those.)

Thanks to everyone for reaching out, coming by, and just overall for your support. It helps my fighting spirit burn a little brighter each day.


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Bring on the visitors + Feeling decent

I just added a sign up area to the How You Can Help page that gives you an idea of when my good days are, and can have visitors and guests. I learned today that even a simple lunch can wear me out, so I’d prefer to keep the number of visitors at at time minimal, noting there are always exceptions to rules.

The time slots list 11:30am-4:30pm, but this is totally flexible (in most cases), and absolutely does NOT mean the entire time. This time block is when I find I lose my steam during the day, so it’s nice to have a human interaction boost. Want to only visit for an hour? Totally fine. Want to go jump around a trampoline gym for two? Also doable. The point is, HUMANS PLEASE.

In other news, I feel way better than I did yesterday. I’m definitely on my upswing to Friday’s infusion. I’m curious to see if I have similar timing of sucktitude with only gemzar, versus last week’s carboplastin + gemzar. Maybe it’ll be less, but even if it’s roughly the same timing, I’ll have 9 whole days of good feelings.

My biggest issue these days is appetite. I have none and take no pleasure in eating. I’ve reached out to my doctor to see what he recommends as far as high caloric dense foods, but if any of you have ideas, lay ’em on me. Whole milk and real butter, and all.


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Round 1 Thus Far…

I can say with confidence that this type of chemo sucks less that my initial chemo. But that’s kind of like saying being swarmed by bees sucks less than being caught in quicksand.

Day 1: Infusion Center
I actually felt pretty dang fantastic after getting injected with my poison to the point that my BFF and I met up with another friend for lunch AND made a trip to IKEA. (For Kenji’s broccoli sprout growing project…) But upon arriving home I was pretty much like:

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Day 2: Time for the suck to begin?
I did leave the house once to go down to our condo gym and do a small cardio workout. We had another friend and her adorable daughter visit for a few hours, and it was wonderful to see them and catch up (she’s down in SD). Mostly, though, we chilled out because I got behind on the nausea. And that is never a good thing. I finally took a significantly high dose of marijuana edible and was golden. So golden that I fell asleep at the dinner table. Oops.

Day 3: The suck is here
This is the day that I begin a two-day regiment of Neupogen, which I chose to self administer at home. (Else, I’d have to go into the infusion center, which means leaving the house and I avoid that as much as possible when I feel this shitty.) Here’s a video of me administering the injection, in case you’re interested. If not, don’t click the link, duh. (It’s actually very anti-climactic in my opinion.) My brother came down for the morning before the BFF had to depart back to NorCal and we had good laughs and I even got completely dressed! But, when it was time to take her to the airport, I felt so nauseated that my brother ended up taking her on his way back to Long Beach. (note to BFF: I es missing jou!) I basically slept off and on the rest of the day with Kenji waking me up to eat.

Day 4: Today
One more blast of Neupogen, my daily broccoli sprout shake, a small breakfast later, I was off to therapy. My therapist could feel my different energy, which at this point is FAR more calm than it has been the past month. Finally. Nausea was still present, but now I think I’m on the way back up until my next infusion.

Cancer has a way of forcing you to “live in the now,” and since that’s what I’ve been trying to work on for months, I’m embracing this feeling and the way it’s forcing me to approach life, currently. I find that I’m meeting myself where I am, instead of trying to control where I want to be. Here’s to hoping tomorrow feels a little better and I can get out and move a little more every day.


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Round 1 has begun

So far, so good. My BFF came down from NorCal to take me to my first appointment. We celebrated the day in style thanks to our fancy St. Patty’s headwear (that she brought). I have a bunch of stuff to pick up from the pharmacy on my way out, but I’m not feeling as “full” from this chemo than previously. Or maybe I’m just remembering wrong. In any case, I feel pretty good right now. We shall see how the day progresses. Turns out, however, my infusions will be faster than previously assumed, so that’s a definite plus as well. 

This is the first day of the last of the cancer’s life. 

That made sense, right? 🙂


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The Bitch is Back

Perhaps some of you have noticed that I went a little radio silent on the 2nd biopsy results — or didn’t realize that my big benign announcement was only for the 1st biopsy.

Let’s just go ahead and pull the band-aid off.

The 2nd biopsy came back malignant.

I start chemotherapy on Friday, March 17. Yeah, that’s four days from now.

How did we get here? During my routine check-up, something popped up on the CT scan, so I was then sent to have a PET scan. As mentioned in a previous post, the PET scan news was not great.

We still went on our 2-week trip to Oregon, then came home and started the testing. Week 1 was the CT-guided biopsy. Week 2 results, clear! Week 3, was the endoscopic ultrasound, and we got the preliminary results that the biopsy was malignant.

(sidenote: Technically this was 5 weeks of waiting for test results at various time, and needless to say the emotional toll it took on my was palpable. Depression definitely reared its ugly head, and I can’t thank my psychiatrist and psychologist enough for their guidance during those weeks.)

Of course, I jumped into action, emailing my doctor to essentially say “okay, let’s get something going,” to which I got the reply from his nurse that the results had not hit my chart yet, they have no record of the results and therefore, we would have to wait.

Fucking waiting again. That’s the give and take with the Kaiser machine. You take the good with the bad.

Last Monday, I got confirmation in my inbox (which, by the way GI doc, that’s kind of a shitty way to tell someone, though I shouldn’t be surprised since you were the same guy who told me the preliminary diagnosis while I was in the recovery room still high AF from my sedation drugs.)

Game on.

I called the oncology nurse and left a message there. I called the appointment center and had them send a message to my oncologist (they have to reply to that system within 24 hours whereas if I email him from my system, they have 48 — I’ve picked up some tricks). And then, out of sheer frustration for not being able to get a live human, I texted my former oncologist a novel letting her know what was going on and if there was any way for her to help. She actually took the time to text the oncology nurse to try to get a response there and then called me to talk about what was going on. (I still love that women and damn Portland for taking her away from me.)

There were a lot of missed calls and back and forth, but ultimately I got an appointment with the doc yesterday, and had a long conversation with the oncology nurse (we might as well just name her — Patti — she gets shit done) the week prior to prep for the talk with the doctor.

So here’s how it’s all going down.

Chemotherapy

  • It will be a 3 week cycle like last time, and 6 rounds, also like last time
  • After the 3rd round, we’ll take a scan and see how we’re progressing
  • My chemo will in intravenous only, with Day 1 being carboplatin + gemzar, Day 8 being only gemzar, and then a week off. (I’m actually stoked that my days have turned out to be Fridays, because that gives me the weekend to recover and hopefully continue to work.)
  • I will not lose my hair. Pretty cool.

My doctor feels very confident that I’ll get back in remission. But if I don’t, that we have an arsenal of treatments to choose from before we get into some of the targeted therapy things.

So, for now, we’ll just see how I handle the first round.

I am again organized with ways you can help. More items will be added soon, I just need to get ready for Friday.