Saturday, September 8, 2012

SEPTEMBER 8, 2012


Well, this last round of chemo turned out to be much more interesting than we wanted it to be.  I will say that, mentally, I went into this round in a much better mental state than I have in the past.  A few things have contributed to that.

My friend Scott came into town this week, and having him here was a really good distraction.  He and I met at the LiveSTRONG Young Adult Cancer Survivor I went to a couple of years ago.  He came in from Toronto by way of Pittsburgh, and it was nice to have him here for a few days!  

In addition to that, I have been spending much more time this past few weeks meditating and trying to keep myself in a better mental state.  So far, it's been extremely helpful.  Over the past couple of weeks, I've been working with my speech therapist at CTCA to teach me how to meditate, and to be able to calm myself quickly and easily.  Sue (my speech therapist) is an amazing asset to CTCA; her services go far beyond just speech.  She does help people with that, but it extends into helping with pain, chemo brain (my biggest issue), meditation, etc.  I absolutely love Sue.  I am so glad that I've been able to keep seeing her; she's been absolutely essential in helping me deal with all of this.  

So, as I said, I approached this round of chemo in a much better mental state.  Knowing that there were only two more rounds left helped, to be sure.  I started Thursday with a pumpkin iced coffee from Dunkin Donuts (yum!!!), and a quick ride to CTCA with Dad and Scott.  When we got there, I had massage therapy with Pat (she uses tuning forks to work with various points in my body to release muscle tension and to bring the energy in my body back into synch).  After that, I went into speech therapy with Sue, and we talked and did a quick meditation.  

From there, we all headed to my med-onc appointment.  Good news is that my CEA is still stable (1.2 this week - and, remember that anything under 3.0 is normal, so we are still very good....).  We talked about the concerns I had about amnesia the past two rounds, and we switched up my meds.  I asked about medical marijuana (specifically edibles), and we added a drug called Marinol to my regiment, which is basically a synthetic version of THC.  So far so good, and it seems to be working.  It's helping with my nausea and it's helping with my appetite, and I have no complaints.  And, taking a few of the other drugs out has allowed me to stay conscious and aware of what's going on, rather than losing days at a time immediately following a round of chemo.  

We finished up with our med-one appointment, talked with the naturipathic oncologist (no real change on any of those scripts), then had a conversation with my nutritionist.  I had some concerns about some issues I was having and making sure that I'm getting enough of what I need, from a nutrition standpoint.  We talked a bit about shifting up what I'm eating and when, and I'll be making some small changes to help with some of the issues I'm having with diarrhea.  On that note, I had to laugh - Barbara, my nutritionist, recommended pineapple and marshmallows to help bind things up.  I immediately had a picture in my mind of two slices of pineapple, with marshmallows in between.  My mind then took it a little farther and added chocolate sauce.  Yeah - I went there.  When I asked her if I was supposed to eat them together, she laughed and I learned that she didn't mean for them to be eaten together.  Bummer.  :)  

After a quick lunch in the cafeteria and a short stop in pharmacy to drop off my new meds request, I headed up to infusion.  My good friend Lisa was there with us through all appointments, and she joined us in infusion for a while, too.  Scott was there, and Mom and Dad were, of course, there.  I had to laugh because there are days when I'm there that I feel like I come with an entourage.  Hey - why not!  Having people there is a great distraction.  

This is where the interesting part of this round of chemo started.  I was just about finished with everything, and my nurse, Carmen, had taken my last set of vitals before discharging me.  I started to feel nauseous, and had been having some twitches in my eyes as well as my back and legs.  When I mentioned it to Dad, we decided to tell Carmen, to be on the safe side.  She came over, and my nausea had (by then) gotten worse.  She asked if I wanted meds, and I immediately said yes.  I needed to have something, right away.  At one point, I told her that in the past four and a half years, I haven't thrown up from chemo, and I'll be damned if I'm going to start now.  Carmen called the doc on call, and we talked about options.  Finally, they decided to give me IV Zofran, which did help.  Unfortunately, within the few minutes it took to get the meds, I went from ok to HOLY CRAP!  My nausea kicked up big time, I went really, really pale (according to my dad), and my vitals went out of control.  My bp (normally in the low 100s over the love 60s) was up to 185/110.  My oxygen was under 90., and my pulse was racing.  In addition to that, my chest got red and rashy.  Basically, I had an allergic reaction to the chemo....the twitching and the nausea were some of the first symptoms of the oncoming reaction.  

This whole process lasted for a few hours; the nurses reacted quickly, and after they gave me three meds to help offset the reaction, I finally started to recover.  In talking about it with my Dad, the reaction by the infusion team was amazing; once Carmen realized that there was an issue, she called for help and the team assembled.  The other nurses took over care of Carmen's other patients, so she could focus completely on me.  They brought the crash kit over (and yes, we had to use some of the items in there), and at one point, there was 6 nurses helping me.  I know I wouldn't have gotten the same treatment if I had been at the old oncologist.  They just wouldn't have been able to handle something like that.  

I will say that having the reaction sucked.  I had leaned forward when I started feeling nauseous, and then froze in that position when everything started to go downhill.  I was in that position for probably a couple of hours.  At one point, I wasn't able to even talk; I had to communicate solely through hand gestures.  Movement of any kind was overwhelming, and exhausting.  When I finally started to feel better, I was able to lean back and relax.  

Even with all of the steroids they gave me, I was the weakest I ever remember being.  It wasn't tired, just physically weak.  I've been sleeping a lot the past two days, and haven't moved much beyond our bed and the couch.  I'm hoping to get up and get a shower today...that would be nice.  

So, we'll see what happens when I go back in in three weeks.  The plan right now is to do a CT scan on the 26th of September, then we'll meet with my docs a few hours later to get results.  Hopefully, we will see significant shrinkage of the tumors, and be able to move to the oral chemo, Xeloda.  

Today, I will be resting more.  I'm still pretty tired, so I won't be overdoing it.  I'm looking forward to feeling better this weekend (which I know will happen), and to getting past this reaction I had.  Lisa is going to stop over today to help with cleaning the house, getting laundry done, etc.  Levi is here with the kids, and they are making me smile.  Mom and Dad have been absolutely wonderful in helping me make sure that I get the right meds when I need them, and just checking in on me.  

Now, onto recovery and the next step....

Comments:

Oh gosh, I remember how panicky I felt when I had reactions to chemo like that! Remember not being able to breathe with Oxaliplatin and then that same reaction you had this time although I wasn't stuck in one position I got restless legs syndrome from the Benadryl so they gave me Solucortisol(sp?). I pray to God this is the last time you experience a horrible time with chemo and that you are DONE, DONE, DONE sooooooon!!! P.S. I was on the clinical trial for Xeloda pills (3000mg twice a day). You must make sure that you remember to drink enough and to eat.
September 9, 2012 at 6:34 AM
Blogger Caroline said...
Wow! What an experience. I had an allergic reaction to the Benadryl (of all things) in my first round of chemo. That was no fun but not as bad as you. Big hugs to you.
September 11, 2012 at 3:49 PM
Blogger Lisa said...
That sounds horrible. I love following your blog. I was also diagnosed with stage 4 (colon cancer) in March. What a ride.
September 11, 2012 at 4:33 PM
Blogger Juanignacio Porras said...

Hola, Hi !!

I am a colon cancer stage IV patient 49 years old, from Spain. I have been figthing since October 2010. I have suffered several and major surgeries, serious complications and I have been on the brink of death.
I had a recurrence in March in my residual liver.
Again new surgery and new chemotherapy.
At this time, I have known blogger of people suffering from this cancer, from Spain and worlwide. I admit I am hooked on them.

When I wrote this words I did not know the new terrible issue.
Yes, I HAVE AN OTHER RECURRENCE, on the same site and same lesion (?). And besides the chemo did not work at all, it's terrific.
If it is possible, I will have my 7th surgery. It is all incredible!! But I have to fight for my little son, my wife, my mother and family and for me too.
 I was to receive my 4th round of chemo but I did not.
Yesterday I had a PET-CT and it seems there no be others metastases for the time being.

September 9, 2012
I had my 7th surgery on the 17th of August. This time they did a Radiofrequency Ablation because my liver is very hurt. The postsurgery time was awful
Now I am feeling pretty good
I am waiting a new CT and I will find out whether surgery  has worked  or not.
Fear is  always with me

I wish you the best and I hope to read your blog for many years.
Good luck and best regards

Juan Ignacio
September 12, 2012 at 5:33 AM

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