Some Good Points, Some Bad Points

I feel like every time I write a blog entry I have to apologize for not writing sooner.  To tell the truth, this last treatment kicked my ass again, and I didn't really feel much like writing.  I was hoping that the new regimen of anti-nausea meds would help, but it really didn't.  The effects seem to be cumulative.  I spent another 4 days (day 3-6) on the couch, wanting the world to end.  It really was a bad combination of nausea, fatigue, pain, soreness, fogginess, and hopelessness.

But that's all over.  I've been feeling quite good for the last few days.  I went to see Phish this past weekend at Bethel (the site of the original Woodstock festival).  We stayed in a bunk house with some friends at a summer camp about 20 miles away.  The organizers provided buses to the concert location each day.  There was a pool, a mess hall, showers (yay!) and live music during the day and late at night.  It was like hippie summer camp.  We had such a great time!  I got lots of knitting done, kept the drinking to an extreme minimum, and I had a blast.

When I have such a good time, I can almost forget how crappy I feel on the Cisplatin.  Almost.  I recently realized that the next Phish festival falls on a "bad weekend."  I was pretty devastated when I discovered this.  I enjoy seeing Phish so much.  It's such a joyful experience for me.  It makes me happy, it rejuvenates me, and it soothes my soul.  How could I miss another 3 days of awesomeness in exchange for this awful treatment?  Phish makes me happy to be alive.  Cisplatin makes me wish I wasn't.  I made up my mind that I wanted to talk to my oncologist about potentially delaying one of my treatments so that the 4th of July Phish festival could be on a good weekend and I could enjoy myself.

I also had a scan yesterday.  I got all hopped up on steroids, and I didn't experience any kind of allergic reaction (phew).  My doctor called today with the results.  There's no way to sugar-coat it.  Unfortunately, the disease has progressed again.

Ugh.

I was hoping for some relief from this brutal treatment and I actually got it, though not in the way I was expecting.  Since the tumor has now been growing for at least 3 months, I need to switch to a new drug.  I'll be starting on Xeloda (capecitabine) soon.  I was supposed to meet with my doctor next Thursday to begin the next round of Cisplatin.  We're going to keep that appointment and I should start on the Xeloda shortly as long as my blood counts are okay.

My oncologist at Dana Farber offered to let me take this drug with my local oncologist, but I'd rather not bounce around between doctors.  I think she was relieved to hear this, and I was happy to say it.  She agreed that it would make it easier for her to treat me and to offer new trials, and that's exactly what I want.  It's a pain to drive to Boston, but I really want to have all options available to me.  Some people drive much further.  I really have it pretty easy.

I've been trying to research Xeloda.  So far, it looks like the most common side effects are nausea, diarrhea (oh joy), and hand and foot syndrome.  I think the nausea and diarrhea are mostly mild, but the hand and foot syndrome is a little disconcerting.  Apparently the hands and feet get dry and blistery.  Most people have said that if you proactively moisturize with special creams, it's not so bad.  I just hope that it doesn't affect my knitting.  If it does, I'm going to need a new hobby!

While I'm obviously upset that my tumor hasn't gotten under control, I am going to look for the good in this.  I absolutely could not handle the last treatment, and now I don't have to.  This really changes the face of my summer, and I'm hoping it's for the better.  I'm going to stay positive and believe that I'm going to have a few days of side effects, and a lot of days of feeling good.  Some people say this is the easiest chemo they've ever taken.  I would like to start being an overachiever again, so let's hope I have that kind of experience.  As always, I will keep you posted.

Cycle 2

I just started Cycle 2 of my current treatment yesterday.  Today I'm home relaxing.  I almost didn't get treated because my white blood cell counts were borderline (and in an un-treatable range, depending on what information the infusion team was looking at), but my doctor decided to go ahead with the treatment and I'm going to get a Neulasta shot on Friday to boost my bone marrow/blood cell production.  That was a relief because I really wanted to get treated today because of a few events I have coming up soon.  Not getting treated this week would have thrown everything out of whack.  It's hard when I know that for 1 out of every 3 weekends it's going to be kind of impossible to do anything.

I have the half marathon coming up in 3 weeks.  I did a long run last week to make sure I was okay.  I told myself ahead of time that I would be happy with anything between 10 and 12 miles.  While my energy level was noticeably down, it was actually my left knee that gave me the most trouble.  Because I haven't been able to do as much activity as I should be doing, my muscles are a little weak and I'm having trouble with my I-T band.  I was able to do 10 miles, though.  I went to physical therapy for this a couple of years ago, so the plan is just to do the exercises the physical therapist recommended, use the dreaded foam roller on it daily, and walk it out during the big day if I really have to.  I've been training for this for about 4 months.  Quitting now would be so disappointing.

So far I'm doing okay.  I have a little bit of mild nausea, but nothing really troubling.  My doctor coached me on a slightly different schedule for my anti-nausea meds this time around, so it's possible that I might even do better than last time.  Only time will tell!

Not much progress on the waiting room sock... I had an interview yesterday for the young adult program at Dana Farber that took about an hour and a half (it was voluntary, but I like to help as much as I can), so I didn't get a whole lot of knitting done in the infusion room.

More later!

Sum Ting Good

Finally, I'm feeling better.  Yesterday for dinner I was ready for my signature "get this nasty chemo feeling out of my stomach and replace it with some greasy Chinese food" meal.  I don't know what it is, but just when I'm starting to turn the corner I have a serious craving for hot and sour soup.  If it's too early, I won't be ready (we tried it a couple of days ago actually, but it wasn't quite the same).  You can't force it.  But when I'm starting to think about food belonging in my stomach again... oh that's the best part.  I'll have a hot and sour soup, some crab rangoons, maybe some chicken lo mein... yum.

So, yesterday was that day.  I had started feeling well enough to pick up the knitting and to watch a movie that required some concentration for a change.  I have been having trouble sleeping because of abdominal/liver pain, so I decided to go for the big guns yesterday to sleep.  I took an oxycodone (it's a pretty small dose actually) so that I could sleep through the night.  I woke up this morning around 5:30, refreshed and ready to start the day.

I was still a little tired and maybe not 100% out of the fog, but I decided to go to work because I just couldn't tolerate another day on the couch.  The drive in was uneventful, but the morning was a little rough as I dug out from several days of e-mail, attempting to think technically once again.

I begged my cohorts to go out for Thai food for lunch with me.  Even though I was feeling better, I knew I couldn't really tolerate just anything for lunch.  If they had chili in the cafe, I would be okay.  But if they had tuna melt or something equally gross, I would not be able to eat.  Rather than chance it, I really wanted to go for another meal of Asian deliciousness at Thai Chilli.  Oh, it was great.  I had the ginger lemongrass soup that they always serve, a Thai roll, and an order of spicy Pad Thai.  I really think that was the difference for me today, because when I walked out of work I was pretty much back to normal.

I realize this entire post is basically about food, but I can't help it.  I love food, which is why feeling sick sucks so bad!  The funny thing is when they're telling you what to eat during chemo they always tell you to avoid bold flavors or really sweet and salty foods because it might make you feel worse.  Psssh.  Not me.  I guess I am the poster child for what not to eat during chemo, but if it works I'm going to keep doing it!

Now if only I felt like I could tolerate a beer...

Blech

I know it's been a few days since I've posted. I think I was unprepared for just how crappy I would feel at the moment. I was okay for a day or two, then I just crashed with a mix of sensations...

There's the nausea, of course. The feeling like I need to put something in my stomach, but not feeling like eating anything.

Then there's the fog. Oh, the fog. I can't think very clearly. It's described as chemo brain. Whatever it is, it makes me feel dumb.

Then I get so tired because of the anti-nausea meds.

I'm also feeling a fair amount of pain in the liver area, which is disturbing my sleep.

Well, that's how I've been doing. Each day is getting better, thankfully. I think I've settled into a decent rhythm of meds and symptoms, and I expect tomorrow to be even better.

Anyway, I apologize if this post is a bit of a downer, but I wanted to give a quick update. Let's hope the next one is better :-)

Captain's Log, Day 3

The seas were choppy today.  It has not been a great day.

It started with a little bit of nausea this morning, and I was pretty tired.  I took some anti-nausea meds, but I wasn't really able to eat breakfast.  We drove to Dana Farber, having made it on time without me throwing up (victory!) but I was just not doing well.  To make matters worse, it took FOUR ATTEMPTS to get my IV in this morning.  I think that's the worst it's ever been.  They were finally able to put it in my hand, but that made knitting awkward, so I've basically just been sleeping all day.

There are eating restrictions with my study medicine, so I wasn't able to eat until 12:40.  Once I had something in my stomach, I felt a bit better.  Now I'm holding out for a delivery of pizza from Upper Crust for dinner.  It's right down the street.

Sorry so lame, I wanted to write something, but there isn't much to talk about today :-/

Captain's Log, Day 2

Today was such a boring day.  I'm almost done for the day, so this will be quick.  I had to come in for 10 to get my blood drawn, then I took my dose of the study drug and I've had to be available to have my vitals taken, once was an hour after the dose, and the other was 4 hours after the dose.  So, I've just been sitting here in this lovely corner infusion room working on the computer and knitting a bit.  I've turned the heel on one of the socks:

I still have to do the other one, but I haven't really done much knitting today.  I should have plenty of time tomorrow, since it's another all-day appointment.

While I don't want to get too excited, I thought it would be worth mentioning that I am feeling less pain in the liver area.  The nausea is mild but manageable without meds.  The proof will be with my next scan, about 6 weeks from now.

Captain's Log, Day 1 pt. 2: Sock Update

After I finished that blog post I had a stroke of genius...  (well, maybe that's a bit of an exaggeration)

Here's a picture of me in the infusion chair AND a sock check.  You'll note that I've made lots of progress.  I'm hoping to get to the heel soon.