Blow Torches and Hot Coals

This past week has been a full one - I finally have a minute to get my thoughts down.  Last Saturday after the head shaving I headed straight home to climb into bed. It was all I could do to get through my nephew's baptism and the shaving event.  I've talked about hand/foot syndrome from the Xeloda a little bit in a previous post.  They think it's where the chemo leaks into the tissues that experience the most friction - your hands because you are always using them and your feet because you are constantly walking on them.  Each round of chemo the hand/foot syndrome accumulates and can become worse.  Also by adding the IV chemo - this can make it worse as these meds are synergistic. As Saturday evening rolled around my feet felt like I was standing on hot coals and then someone took a blow torch to them.  I couldn't stand, I couldn't walk, I couldn't even stand to have my feet touching the bed. At 3 in the morning all I could do is lay in my bed sobbing.  I had not experienced that kind of pain and nothing I did helped. I thought this night would never end.  I couldn't sleep...every minute that passed felt like an hour.  Finally a decent hour rolled around and I called Dr. Litton.  He of course was so kind and tried his best to help me over the phone.  Of course, there wasn't much to be done.  He told me I could stop taking the Xeloda for the last four days I had left.  I was so relieved to hear that because I was about to tell him that I couldn't take one more dose of it this round.  He asked if I had any pain meds - and I did...I don't like taking pain meds - and I didn't think they would help for this kind of pain, but he said to take them until the Xeloda had some time to work its way out of my body.  Mostly it was just going to take time for this to resolve.  I'm not really sure if the pain meds helped my feet - but they at least knocked me out so I could get some sleep.  It is now 9 days later and my feet still hurt a little bit and are going though another massive blistering/peeling session.  I feel like a snake - my feet have now completely peeled 4 times.  I'm just grateful my hands haven't been as bad as my feet.  They get a little tender and the tips of my fingers peel, but I haven't had the severe pain like I have in my feet.  These pictures are mild compared to how my feet are at their worst.

Sunday and Monday I spent most of my day off my feet and catching up on sleep from my sleepless Saturday.  Tuesday I was able to hobble up to Primary Children's to return some dishes to my friend and to see my buddies.  I have to say this visit did my heart so much good.  It was so good to see my former coworkers and friends.  I miss working at PCH so much.  I miss the kids, I miss the doctors, nurses and whole team I worked with.  It's a good group of folks.  I forgot how much fun we had at work and how much time we spent laughing.  Tuesday was a good reminder.  Laughter really is the best medicine.  I just love my PCH peeps so much!!

A handful of my favorites!! Oh my heart - Queen Afif...I love that she is in this picture!

Paige and Linn - you make me laugh so hard!!  I love you two!!

After my visit to the hospital I had my appointment with my most favorite doctor...you guessed it...Dr. Litton.  He walked in and said - "looks like you have a new hair cut...what happened?"  (of course he said it in a joking way)  I said..."you know, it's this thing....called chemo...I don't know if you know this, but it destroys all rapidly growing cells which includes hair...did they not teach you that in medical school?"  He thought that was funny - but he thinks all my jokes are funny because I'm his favorite patient.  :)  Plus I bring him treats which helps. He was encouraged that my coughing has decreased and my shortness of breath is better.  He did not love that they pulled 1 liter of fluid off my lung.  His hope is that the chemo will get rid of the cancer cells in my lungs so they will stop producing that fluid and I will get to stop having it drained.  I could already feel it filling up again...and it had only been 6 days since the last thoracentesis.  He talked about placing a temporary drain called a PleurX catheter - it stays in and I drain it at home when I need to.  I'm hoping we don't get to that point.  When I can feel the catheter next to my lung when I get it drained it is super uncomfortable - I can't imagine having something in there all the time.  

I let him know we were going to Arizona and California over the next two weeks and needed to have chemo arranged to be given @ Mayo while I'm in AZ.  My hematocrit was 26 and hemoglobin 9 so we opted to have a blood transfusion before I go and get my lung drained again on Friday.  I'm so lucky to have a doctor that listens to me and lets me be involved in the plan that will work best for me.  He also lowered my dose of Xeloda for the next round so hopefully my feet won't get so bad.

Since I had a couple a hard days Dylan and I decided we needed a treat - of course we headed over to get Hawaiian shaved ice.  I can't tell you how yummy these are!

I couldn't get Dylan to look at the camera...

How can you say no to this!?

Wednesday I saw my palliative care doctor - Dr. MacPherson who I love just as much a Dr. Litton.  She always finds ways to make my quality of life just a little better.  She also does acupuncture to help with all my side effects.  I always feel better after I see her.

Thursday was the big blood transfusion - 2 units.  I had a great nurse - the transfusion went off without a hitch...no reactions...I LOVE that!!  I used to donate blood all the time back in the day before cancer.  They would call me all the time because I'm O neg and CMV neg - so they use it a lot.  I'm sad that I can't donate anymore but so incredibly thankful to those who do donate.  Thank you to whomever donated their blood so I could feel better!!

This is my "extra thrilled" look....I'm sure my mom was incredibly bored waiting all day for 2 units.

Friday rolled around and I reluctantly made my way to St. Marks with my sweet friend LeEtta for my thoracentesis.  I feel better after it's done, but I hate having the procedure.  It is usually Stephanie or Melissa the PA's that do it  - this time was Melissa - and they do a great job but I don't enjoy the process.  This time they only got 600cc - which isn't as much as last time, but it had only been 9 days since last time.  Before it had been 2 months...so I'm a little worried about that.  I guess we will have to wait to see what happens with that.  I get chemo in a couple of days so hopefully the fluid will slow down!

Waiting forever in the waiting room...good thing I had great company.

More pomegranate juice :)  I can't believe that comes out of my body!

Sometimes I really don't like this statement because I feel like I've had plenty of opportunities to become "stronger."  However, this is a good reminder - You really have to watch out for those bears!!  

So there you have it - I'm all tanked up, drained and ready for a fun/relaxing vacation with my sister.  I just wanted to say one more thing before I end this post.  I'm finding that many people are having a hard time knowing what to say, or may say the wrong thing to someone who has cancer.  There are so many adults and children that have cancer, we all know someone's family who is struggling with this stupid disease.  I have had so many people say wonderful and kind things, and some people who have said things that have been hurtful but they probably had no idea how their words affected me.  Maybe I'm just ultra sensitive right now, but I would like to add a section in my future posts that includes things that are a good idea to say and things that you shouldn't really say to someone in the midst of fighting their cancer battle.  Maybe some "words of wisdom."

Words of Wisdom:
Good things to say - I'm thinking about you, I love you, You are in my prayers, Can we go to lunch? Can I bring you a drink?
I was eating with Dylan and a couple stopped at our table.  The wife looked at me and gently put her hand on my shoulder and said "I just wanted you to know I just said a prayer for you - I hope whatever you are dealing with gets better."  I didn't know her - she was a stranger, but just to know she took the time to say a prayer for me, someone she didn't even know, was very humbling and overwhelming.
We walked into Mcdonalds to grab a quick breakfast yesterday and I had a shirt on that said "hope in pink."  A lady looked at me and my shirt and put her fist in the air and said "GO PINK" and winked at me.  Again - she had no clue who I was, but gave me a little cheer.  It was so sweet of her and made me feel like there was someone else in my corner.

Things said to me that probably shouldn't be said - to anyone that has cancer...
What is your prognosis? (Are you going to live or die)  How long do you have? (When are you going to die)  What are you learning from this?  If you aren't working, what do you do all day?
You are going to beat this!  While this sounds like a great positive statement - I'm not going to beat this.  There is no cure for recurrent metastatic breast cancer right now...only chemo for life until chemo doesn't work anymore. It is heartbreaking every time someone says this.
The chemo has killed my taste buds...I had mentioned while eating something yummy that I couldn't taste it and it was frustrating.  I was told that maybe if I imagined what it tasted like, then I could probably taste it better.  Believe me...I know what it should taste like - there is no amount of imagination that is going to magically make my taste buds work.
I was at a wedding and we were waiting outside for pictures - it was pouring rain.  A stranger walked up to me and said "Well, at least you don't have to worry about your hair getting messed up."  That probably would have been funny if I said it, or if someone who knows me well said it, but it really hurt coming from a stranger.  I only wish I had hair to get messed up.  I would gladly have a bad hair day than not have hair.

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


Tiffany