2nd Treatment

My second treatment was yesterday, August 27, coninciding with Katherine's 4th birthday.  The only up side to this is that day one is usually ok as far as how I feel.  Aside from having the 5-FU pump attached to me, nothing was out of the ordinary. She was overwhelmed with her birthday weekend - family party on Saturday, lunch and shopping for new shoes Sunday, cupcakes to school and then presents from Mommy and Daddy on Monday - her schedule is out of whack because she's so exhausted by bed time, she has a hard time getting settled.  But this week back at school should help her get back on schedule.  She also, for the first time, expressed worry about me and the medicine I'm getting.  She told Sean Sunday night in bed that she was worried about me because I had to get more medicine and thought she wouldn't see me at all for her birthday.  She came downstairs and I assured her I would be here when she got home.  She asked for me when she woke up, and Sean reiterated I would be there when she got home.  And when she walked into the house and saw a princess tent waiting for her, she was back to her old self.  No worries at all.  I even joined her in her tent for a while (as Belle - Kat was Rapunzel and Sean was Eugene, of course.  Daddy is always the Prince.). 

As you can see, I'm in scarf/hat/wig mode now.  The hair is mostly gone.  I went in last Tuesday and got my head shaved to 1/2 an inch and it's fallen out much more since then.  Oddly, I still have the hair on my arms and legs.  Eyebrows and eyelashes are still there but I don't know for how much longer.  Some lost them all, some just have thinning.  I don't know which I'll have.  Only time will tell.

So second treatment started yesterday.  The day went well.  As I said, I don't get many side effects on day one.  Today I woke up with some nausea and quickly took my meds for the morning.  My docs agreed that the extensive nausea last time was not normal and needed to be addressed.  They lowered my chemo dose by about 20% (I was assured practically no one can stay on the level the first start you, but they go from the recommended dose from the studies and then adjust from there).  I will also be taking steroids in addition to the anti nausea meds starting Thursday, as they give me IV steroids with the IV chemo on Monday and that stays in my system for 3 days.  On the first three days as well I take Emend, which is a tri-pack of anti-nausea meds specifically made for chemo patients.  Day one works great, but even last time by day two I was sick, so I'm not sure how much it helps.  I don't really want to find out, to be honest!  I could be much worse than this!  My goes for this round of treatment is to try to be as present as possible and not be in bed all the time.  We'll see how well that works.  I find that sometimes being in bed away from Katherine allows her to play more and not think about Mommy being sick, whereas laying on the couch and not being able to do anything keeps it in her mind and makes her worry more.  Nausea usually takes charge, however, so we'll see how much control I can have over this decision. 

I've called Penn to set up a time to come in for a second opinion.  I'm waiting for a nurse navigator to call me back (which should have happened by now, but I've been too busy to care that it hasn't) and set up an appointment.  When I told my doctor, Dr. Dotan, she was excited.  A former colleague of hers, Dr. Roger Cohen, works at Penn and specializes in cancers of an unknown primary, as well as head and neck, and lung cancers.  She said if anyone would know what to do, he would.  She gushed.  Literally.  She let me know she'd send an email to him letting him know I'm setting up an appointment.  Because they will probably put me in with a GI doctor when they set me up, it's important to mention his name to scheduling to try and get in with him.  I was happy to hear her excitement.  Any time your doctor shows enthusiasm over something related to your condition, it's a good thing.  She also told me she was optomistic that my treatment would work.  I know she can't know that for sure, but just telling me she was optomistic lifted my spirits and I've been holding on to that for days. 

I have edema in my right leg, as that is the leg with the enlarged lymph nodes, and they seem to be blocking the nodes from doing any normal work, thus causing swelling.  It's gotten worse over the last week and I'm hoping this round of chemo will reduce them a bit and ease up on the edema.  It's not painful, but it's very uncomfortable.  Typical feeling of swelling - tightness, heaviness, etc.  I'm back on the 3 week rotation with my chemo now, so since the edema started in week 4 this last time, I'm hoping it never happens again!

On a final note today, before I suck down my smoothie for breakfast in the hopes it takes away some of the nausea, I've received so many amazing cards and letters from people this past month - some from people I haven't seen in years.  I even just got a post card from long-time family friends (the kind you call cousins that aren't related by blood - you know the ones), that they are running in my honor in the LiveStrong run upcoming.  That's an amazing feeling when you read that.  Your thoughts and outpouring of kindness has been uplifting and overwhelming, and I wanted to give you my heartfelt thanks.  The support I've been given is beyond anything I would have imagined.  Lifting my spirits with each receipt.  And a good spirit lifting is what I need most right now, as being on disability gives you a lot of time to think, and not all of the thoughts are good, of course.  So thank you all.  I really appreciate the support.

Don't forget to watch the StandUp2Cancer fundraiser on all major network channels on September 7th.  Any amount will help.  http://www.standup2cancer.org/

xo, Lisa