Too Toxic

It's been a long time since I have blogged.  I have tried several times, but for some reason couldn't bring myself to do it. A lot has happened in the last few months - it's hard to know where to start. I've been trying to cross things off my bucket list while getting treatment.  I'm finding that the things I want to do, I should have made the time to do them long ago instead of now waiting until I've been given a deadline.  If I can impress anything on anyone reading this it would be just that...try to find a way to do the things you have always wanted to do, plan them, make time for them.  My body is weak - I feel like a young person with a 90 year old body. From the chemo I have neuropathy in my hands which makes it difficult to do simple things like type, hold a pen, quilt/sew, even taking my contacts out. My fingers are almost completely numb. My feet are numb with neuropathy as well, which makes it difficult to walk. I've fallen about 7 times in the last few weeks because of this. It's difficult to tell if you are stepping down on your feet right.  My legs feel like noodles - very unstable to walk on. The chemo has affected the muscles in my legs and arms so once I fall I don't have the strength to get up on my own.  It has been very humiliating needing people to help me up off the ground.  I used to be so strong...this frail body of mine is not me. The chemo I have been getting since June has become too toxic for me.  I started getting a horrible burning rash with the last couple of doses.  We were hoping taking steroids for 5 days with chemo would alleviate the rash but as soon as the 5 days were up the rash came with a vengeance.

 
It's hard to tell from this picture but this rash was on FIRE!!  It's become an every 2-3 week routine to drain my lung.  I've lost count now...I think I'm up to 15 or 16.  Dr. Litton said it's time to get the implanted catheter. (PleurX)  I don't want it. I don't want it. I don't want it!! One more tube/procedure/risk for infection.  On the other hand I can drain my lung at home and I won't have the risk of getting my lung punctured with the thoracentesis. We were so hoping the chemo would reduce the fluid building up around my lung but it has not done that.  In fact, last week I had to have my right lung drained 3 times in 8 days and now the left is following suit - I had to have the left side drained on Thursday before we flew out on our Costa Rica trip.  I was so excited to have been off oxygen for about 4 weeks, but all of a sudden I have needed it again.  My sats have been in the 70's- when they should be above 90.  This has been very disappointing because my sats have never been this low - even when my lungs were full of disease. The chemo has also had an effect on my vision - I haven't been able to see for the last 6 weeks with my contacts or glasses.  It's been frustrating, I can't read things, and sometimes can't drive.  I've also been swelling up like a balloon. My cankles are super attractive.

So what does all this mean???  Dr. Litton said the chemo I've been on - Abraxane and Xeloda have probably reached their maximum potential for me.  Now they have become too toxic to give, and they aren't working like they used to be. (due to my new need for oxygen again and the increased frequency of thoracentesis).  This was hard news to swallow as there are not many drugs they can use to treat my disease. I was hoping to be on this chemo for much longer than 4 months.  He gave me the options...which were only 2 for now.  We decided at my last appointment that we would hold my treatment until we get back from Costa Rica.  This will allow my body to try to get rid of all the toxicities before we start the next round.  I had mixed feelings about this.  I was glad to have a break from chemo - my body is such a train wreck right now, but I'm also freaking out because it will be about 3 weeks without treatment.  I can just imagine all those rapidly growing cancer cells going crazy!  I will have a chest CT the day after I get back from our trip and the next day will start Carboplatin and Gemcitabine.  I'm not looking forward to that combo, but there aren't many options.

So for now I will focus on this beautiful country we are in.  Being at the ocean makes everything better.  I haven't had a vacation with all my kids in a very long time.  It has been good to all be together.  It was priceless watching their faces as we took off on the plane for their first time.  This trip has been good for my heart.

More to come later - I won't wait this long to blog again.  I still have lots to catch up on.


Be brave, my heart. Have courage, my soul.

Tiffany