Every day is different

In my last update I mentioned that I started feeling nauseous a couple of days after the last chemo treatment.  Unfortunately that nausea continued for over a week until 12/14, but it's finally gone.

The biggest problem I now have are my feet.  One of the side effects of the oral chemo (Xeloda) is Hand/Foot Syndrome. HFS (palmar plantar erythrodysesthesia) is a dermatological side effect and  occurs when small amounts of medication leak outside of the capillaries and cause damage to exposed tissue.  My hands are affected a little bit, but the feet are in bad shape.  They are all callused and hot...imagine the bottoms of your feet with a massive sunburn. 

Now think about how that would affect your day.  What shoes do you wear?  Do you really want to get up to get that [insert anything] right now?  I also have several pinched nerves in my feet, which prevent me from walking barefoot.  So I need to either wear thick socks, which warm my feet up and make the HFS even worse, or wear flip flops.  Flip flops sound good, especially because they don't soak up the heavy cream that I apply throughout the day, but my flip flops have small indentations on them, which create friction on my feet, which hurt.  This frustrates me greatly because I just started feeling normal, and now I can't walk!  I literally can't walk.  

This started to get bad last week, so I told my homeopathic oncologist about it when I talked to him last Tuesday.  He recommended a couple more supplements - high dose Vitamin B6, Sea Buckthorn, and a homeopathic Calc Sulph 6x. I started taking them Friday night after staying home from work because I literally couldn't be on my feet.  By Sunday, things started feeling a ton better, but then my pinched nerve kicked in.  I told my local homeopathic doctor about my pinched nerve when I saw him yesterday and he sent me home with some Silica, so hopefully that will kick in soon. I've also made an appt to see my podiatrist on Wednesday to get a shot for my nerve, since I went through a series of shots earlier this year to treat my pinched nerves.  Let's hope that helps too. Plus, I'm hoping he might be able to clean up some of the calluses on my feet from the HFS while I'm there - I mean, he IS a podiatrist, right????

My MoMMa got here on Saturday - yayayayayayayayayaya!  There really is no substitute like the comfort of one's mommy. We've been preparing for the arrival of "the kids" - my brother, sister-in-law, and nephews get here on Wednesday.  I really can't wait!  I know it's gonna be interesting having a full house and two boys full of energy, but there's something about having all your family together for the holidays that just feels right.  I can't wait!

I went shopping at this awesome toy store over the weekend.  You should've seen me hobbling around slowly, very slowly.  It made me laugh to see my parents walking ahead of me and then slow down to wait for me "Don't worry about me.  I'll catch up!" This toy store wraps all your presents for you.  They put a sticker on the present for you to write the To and From names on, and they even put a Post-It note on it labeling what's in the box - BRILLIANT!  And they do this year round!  I love places that provide this level of service. I'll definitely be back to Toys & Co. 

My next chemo treatment is on 1/3.  I go back on 1/10 for my CT scan and MRI.  Then, I return on 1/22 for the results of the scans.  The best news ever would be that the tumors in my liver have shrunken a bit and there are no new tumors in my body.  That's all I want for Christmas :)

Merry Christmas and Much Love to all!

Sarah xoxoxo

Chemo #3 Update

Sorry for not blogging in a while.  No news is actually good news since there's not much to blog about that it's just normal stuff.  I had a few visits from some very dear friends - some friends (and previous colleagues) came up from Atlanta for a day/night.  We juiced together - exciting stuff for a Saturday night!  And some other friends from London came across the pond for Thanksgiving.  We did the traditional eating and drinking too much (I didn't cook - thank you to my stepmom, who's also a vegetarian but can still cook meat like no one's business!).  We laid around all day on Friday and watched a James Bond marathon and I fulfilled their cravings for BBQ with some St. Louis ribs from Midwood Smokehouse (now I'm hungry).  Good times!

I also had a quick trip to San Francisco for work.  I didn't get to enjoy the city much since I was either working from my hotel room at 6am (9am ET) or working from the vendor's conference room the rest of the day, but that didn't stop me from enjoying the food that this amazing city has to offer.  I had three great dinners - Beretta's in the Mission, Le Colonial in the Tenderloin (or Union Square) and Frances in the Castro.  My favorite was Frances - I had a smoked beet salad over cottage cheese and bacon beignets to start (OMG heaven!), this amazing mushroom soup with apple and duck confit (duck confit is my favorite meal in the world), and some beef medallion entree that I was too stuffed to really enjoy. And of course I eft room for dessert - a chocolate torte with rum butter pecan gelato.  I seriously gained 4 pounds while I was there - and totally worth every ounce!

I got in late Wednesday night and we left early Thursday for Duke.  My stepmom drove me this time instead of my dad (thank you!) and I specifically scheduled a later appointment so we didn't need to leave super early (left at 7am).  I had some cream to put over my port this time to numb the area since you can imagine how it might be a little uncomfortable for them to stick a big ole needle into your chest.  I was shocked at how much it really helped this round, especially since I actually saw the needle this time - OMG scary.  It's a little over an inch long and about the diameter of a sewing needle. They just stick that sucker into my port and tape it down - it's attached to a short tube that the IV plugs into later.  I don't mind needles, but I wish I could unsee that needle!

I was surprised at how little I had to wait for the doctor given that my appointment with him was at 11:40am.  I've come to learn that the later the appt, the more likely the wait will be long since he will take as long as necessary with each patient, especially new patients.  Once we were called back the nurse told us that we might be in for a wait since he was seeing a new patient, but it's wasn't more than 20 minutes - in my opinion, not bad for a doctor's office.

The doc told me that I didn't need to come back in December for a chemo treatment.  He said that it would be right in the middle of the holidays and that there is not reason not to push it out another two weeks to January.  He said I was doing really well and he's still very optimistic with my prognosis because I've been tolerating the chemo so well.  My biggest complaint was this Hand/Foot Syndrome which is like a sunburn on your palms and feet.  I've got some callouses on my feet that grew overnight (no joke!) and the skin on my hands feel very thick and sensitive.  But truthfully, that's not much to complain about.

So I'm now enjoying the idea of spending a totally normal holiday with my family.  My mom is coming down from Chicago and my brother, sis-in-law, and two darling nephews are coming from Bozeman, MT.  And my dad and stepmom are already here.  We will have a full house for 10 days - and I can't wait!

The treatment was uneventful.  I took my homeopathic anti-nausea meds immediately to prevent nausea and that seems to work very well.  The neuropathy in my hands kicked in immediately and along with the cold aversion.  And there's another side effect that was more prominent this time - my hands would lock up.  This is a very scary and odd sensation, and fortunately it only lasted 24 hours.  I can't imagine what people with Parkinson's (or other neurological diseases) go through since it's your body doing things that you can't control - that's just not cool, man.  Not cool at all.  But like I said, it only lasted 24 hours.

Fatigue was the biggest side effect this time.  I slept 14 hours Saturday night and laid on the couch all day Sunday watching football/napping (one of my favorite past times!)  I even took the day off on Monday since I just didn't have the energy or brain power to work much (although there were meetings that I ended up taking since I just couldn't reschedule them).  Tuesday was better on the energy front, but I actually felt a bit nauseous in the afternoon/evening.  I took my homeopathic pills but didn't have my Zofran with me, so maybe that had something to do with it??

Regardless, I'm feeling a lot better today. I've got some energy and I'm not nauseous.  So I'm off to start my day!  I've got my company Christmas party on Friday night and my friend from Charleston is coming for the weekend, so I can't wait until I feel 100% normal again - maybe that'll be today???  Lots to look forward to during this holiday season - and lots to be thankful for...like all of you who continue to send your love and positive vibes my way through this journey.  I'm thankful for each of you :)

much love,
Sarah xoxo

Feeling so much better!

This round was much harder than I anticipated. I know it's supposed to get compoundingly worse, but damn! I was so much more nauseous. I ended up taking the Compazine for nausea, which makes to drowsy. Swapping one side effect for another!

Yesterday I had my follow up with my homeopathic doc in CLT (not to be confused with my homeopathic oncologist in PHZ) and he gave me some meds for the nausea. In less than 8 hours I was feeling a gazillion times better, and today I didn't even take my Zofran. If you're keeping up on my meds, Zofran is for nausea, with mild drowsiness and Compazine is for nausea, with massive drowsiness. I never needed the Compazine the first round. I've been a touch nauseous today, especially after overindulging on the sushi tonight, but I can handle it.

Yesterday I wasn't sure I'd be able to go to work (thank gawd it was a banker's holiday!) but I woke up today at 5:30am and was ready for the day!

Some folks have asked if I've kept up with the juicing. Sadly, the answer is no. I feel guilty since I know it's good for me, I just can't do it alone. I've been meaning to put together a list of things that I'd like help with so when folks ask if they can do anything for me, I can whip out the list. Be forewarned people! If you ask if you can help me, I may actually give you a list to choose from. And juicing is on that list!!!!

Here's the list so far:
- juicing
- cleaning the litter box
- taking out the garbage
- hanging artwork (I never got around to doing that!)
- cooking a good meal for leftovers (like a good soup. I heart soup)
- chopping veggies for snacks
- laundry (bed sheets in particular! I hate folding those things)
- cleaning out my closet and moving the clothes that don't fit to the other closet

Damn, and that's just off the top of my head!

During this round, my body has been craving fresh fruits and veggies. Seriously, the only thing that made me feel less nauseous was fruit. Crazy! I guess it shows how your body really tells you what it needs. Weird.

My other side effects has decreased slowly. I still can't hold anything cold, but its better. Same for drinking cold liquids. I having tingling in hands and feet every once in a while, but no biggie. The worst thing was definitely the nausea. It's like a really bad hangover, without the party the night before. What a gyp, huh?

More soon!
Sarah
Xoxo

Chemo #2

My chemo treatment went smoothly yesterday, in terms of the appointments. My dad and I drove up to Cary, NC to stay with my dad's cousin and wife.  We went out to dinner at a yummy Turkish restaurant, and have a great night's sleep.  We arrived at the Duke Cancer Center at 8:40am, I checked in at the lab and we were seen in about 10 mins.  They drew blood at hooked up my IV to my port.

Then on to my doctor's office.  After checking in and grabbing a cup of Keurig-style green tea, we were immediately called in.  We saw Leigh, the awesome Nurse Practitioner since the doc was out.  The visit went well, and it's a great sign that I tolerated the chemo so well. Unfortunately, we learned that Leigh, the ultimate email-responding NP, is having surgery and will be out for the next 3 months.  That sucks!

We finished our visit with Leigh with hugs and well wishes and headed up stairs to the clinic.  We checked in and since it would take 30 minutes to mix the chemo, we had just enough time to run to the cafe downstairs and grab some lunch.  And we were called back as soon as we were done!

I found out that my treatments will take 3hr 30mins each visit and that they won't get shorter - oh well!  So I settled into my awesome recliner with my warm blanket for a couple of cat naps.

I bet my dad that I'd have to pee at least 4 times, and I was right.  You forget all of the fluids that are going through your body!

I started to get nauseous as we were leaving, and I also felt a little pulsating through my body. The drive home wasn't very enjoyable, but it was fast.  I popped a Zofran for nausea and just kept my eyes on the road in front of me.  My dad and I arrived back at my place and my stepmom was busy making meatloaf, my favorite meal!

My place was also a mess, so they helped me clean up. The steroids that I got with the treatment were kicking in and I just couldn't sit down.  At one point I actually found my self walking in a small circle while reading something on my iPhone, out loud.  It was trippy, but weird.  I eventually crashed but that made me even more nauseous.  I ended up taking a Compazine, which was a little upsetting for me to admit that I couldn't handle it.

The cold aversion was there again.  It hurt my throat a little to breath the air outside or drink room temp water.  I couldn't eat a piece of cantaloupe that was from a fruit tray.  I got a headache, which I bet is from the steroids. I really had to wear gloves around the house since things like the laptops, or my fork and knife, or my glass of water (unless it was warm water).

This morning was a bit better.  I popped a Zofran in the morning and went out to breakfast with my parents.  I worked from home but didn't take any meetings so I could try to catch up from my email hell.  My stepmom worked from home too so I wasn't alone.  It was an uneventful day.  I had less side effects with the neuropathy in the hands and feet. Cold still hurts though.  But I know it gets better every day.

I emailed one of the people at my gym and let him know that although my membership had been on hold for 2 months, with only one month left to go, I wasn't going to renew at this time.  Of course once this cancer stuff is over, I'll return and focus on shaping up again, but right now I'm not allowed to lose weight, and with the portacath in my chest, I'm not allowed to lift weights more than 5 lbs.  My gym is really cool.  They're very personable and continue to exceed expectations.  I got an email back asking if I was accepting visitors so we could talk about what things I can do.  Also, they're going to leave my membership open so I can use the sauna and steam room and the periodic walk on the treadmill. This will be so nice as the temps get colder since I need to walk, and the sauna/steam room will be very relaxing and will help keep me warm with my issues with cold aversion. Plus, I just got a big ole bouquet of tulips delivered to my door from my CAC family (CAC = Charlotte Athletic Club). Seriously - these guys rock!

Ok, I'm off to bed.  Hopefully the melatonin will help me have a good night's sleep.  I think the steroids last night really tweaked me out!

More soon,
Sarah
xoxo

Leading up to next round

I had a pretty normal two weeks. I went to my cousin's baby shower in Raleigh (see pic below).

I had dinner with some colleagues.  My friend from Atlanta visited for the weekend.  We shopped and I melted my credit card. But damn, I've got some cute new clothes!

I had to fend for myself for food.  I'm not great at that.  Fortunately, I've got my dad and stepmom very close by and I crash their dinner frequently.  When I was working late, my dad picked me up - so sweet!

I went to the Amazing Maize Maze with some friends.  This thing is awesome!  It's this huge corn maze and you go with a group of friends to find your way through the maze by collecting pieces of the map.  There were 12 pieces and three levels of the maze - 5 pieces, 5 pieces, and 2 pieces.  You get a blank map, a big flag and don't forget your flash lights, head lamps, and warm clothes (and beer, wine, or flask).  Last year our time was 1hr 50mins.  The year before, when I wasn't there, they did 2hrs.  This year we beat our time again with 1hr 36mins.  

I'm looking forward to some other visitors from Atlanta in a couple of weeks and some friends from London might come for Thanksgiving - yay!  And then the piece de resistance is my mom and brother, sis-in-law, and two nephews that will come for 10 days for christmas. YAY!!!!

Looking at scheduling of my treatments, I've got 3 more (last one was yesterday - I'm writing that blog post next!), and then my scans in January and I get my results on 1/22/13.  That is what I call the Go/No Go for the liver surgery.  So there's the date, nothing to do until then, other than complete the chemo, get over the side effects, feel normal, and see friends and family, oh and I'm going to San Francisco for work - sweet!  Not bad :)

More soon,

Sarah

xoxo

All is Well

Things seem to be getting better every day.  Yesterday I didn't take any nausea meds and I felt ok, so I'm gonna try to stay away from those for now.  Not sure if some fatigue was a side effect of the nausea meds, so my energy has been really good too. 

I had dinner with a few friends on Tuesday night, and I went to a small happy hour for a colleague on Wednesday.  It was good to get out and see friends since I've been working from home all week.  But man, it's hard to have to put pants (and a bra!) on when you've been working from home all week - hahaha!  I had a glass of red wine with dinner on Tuesday, but only drank about 1/4.  I just wanted to see how it tasted and how I felt.  It tasted good, but it didn't "feel" the same.  It wasn't a bad reaction but more of nothing. So not really worth it, for now.

I'm feeling really good right now - almost normal (Mon Dieu!)  It's been soooooooooooooo nice having my mom here this week.  She makes me awesome snacks of fresh fruit, Ants on a Log, and fresh pressed juice.  She's been making some great meals too and we've hit a good balance between nutrition and cravings because I crave carbs and meat right now. She leaves tomorrow morning (boooooo!) but she'll be back in 7 weeks (yes, I'm counting).

So check this out - my first chemo treatment costs $30,858.70 - isn't that CRAZY!  The major cost was the Oxaliplatin at $27,450.  With my Aetna coverage, the member rate is $2,199.93, which is covered 100% because I already met my max out of pocket for the year.  Not to get into politics, but this is one hell of a reason to have health insurance.  This is the cost for each treatment.  CRAZY!

This weekend I'll be going with my dad and stepmom to Raleigh for my cousin's baby shower.  I'm excited to see a bunch of my family. Then it will be back to work on Monday.  I must admit that I have enjoyed working from home this week, but it's likely that it's because my mom has been with me.  It'll be nice to be back in the office surrounded by my colleagues, but that means putting on pants again :(

Sarah xoxo

Side Effects

It's Day 4 after chemo via IV (Oxaliplatin), and Day 2 of Xeloda (pills for 14 days) and the side effects have been a learning experience.

Aversion to cold - this was most prominent on Day 1 and has greatly subsided, which is supposed to be the case.  The duration of this side effect will increase with each Oxi session.  This will be quite annoying because it will prevent me from doing some fairly minor things like:

• Washing my hands in a public restroom if there is no hot water
• Using hand sanitizer (alcohol is cooling)
• Preparing foods that have been in the fridge/freezer
• Drinking/eating cold and even cool liquids

I don't have the seasons on my side since winter is coming and that should really suck.  Breathing cold air will become painful, and I'll need to bundle up just to walk those 4 blocks to work.  And I'll probably have to change my work wardrobe to include things like boots, tights, leggings, and leg warmers.  Just another excuse to go shopping!  

Neuropathy (loss of feeling) in the hands/feet - I had minor tingling occasionally during the first 24 hours.  Again, the duration of this side effect will increase with each Oxi session.

Nausea - ick.  I'm not a fan of taking pills but boy did that change once I started feeling nauseous.  Let me try to explain so you can empathize. You know when you feel sick and nauseous and you think to yourself "Maybe if I just puke, I'll feel better"?  Well, even if I puke, I won't feel any different.  And, I'm probably going to feel like this for a while.  That sucks, doesn't it?  But, things are getting better.  Drinking a lot of water really helps (isn't that cool?). And eating sometimes helps too - especially sweets (yay Halloween candy - Candy Corns are my favorite).  I'm taking Zofran and I haven't needed the Compazine yet.

Fatigue - wow, I had no idea you could be so tired...ALL THE TIME.  But it's weird because it's not a fatigue that is preventing me from doing things.  It's just slowing me down.  If I rally, I can still "do it". I just need a little extra motivation...and naps :)  I took a great two hour nap yesterday after having brunch with friends.  I love Sunday naps.  I need help reminding me to take it easy because I so used to having energy and wanting to go-go-go.  So please help remind me to slow down.

Loss of Appetite - I think my taste buds are dying/changing.  I have a funny taste in my mouth that just won't go away.  The first bite of food makes my jaw hurt - like when you eat a watermelon jolly rancher.  My stomach still knows I'm hungry, so that helps "remind me" to eat when I don't feel like it.  But I definitely still have an appetite. When I smell food, I want to eat it.  And I still have cravings, although they're not very healthy.  I had a burger and tater tots on Saturday, and I haven't been able to stop thinking about those tater tots!  My mom and I were making a grocery list and I told her how I'm craving carbs but I wanted to get something healthier than tater tots.  After not coming up with a suggestion that seemed to make me happy, she looked at me and said "Do you want me to buy you tater tots, honey?" No sweeter words were ever uttered :) Boy do I love my MoMMa.

Colon Issues - yes, constipation.  The side effect of the nausea meds is constipation.  And a side effect of the Xeloda is diarrhea.  Why these things can't cancel each other out, who knows. I only have slight issues with the former, so we'll see what happens in the coming days.  

I took a good walk with my mom today - 45 minutes in the beautiful sunshine (damn it was hot!).  I was so amazed at how much energy that gave me.  There was a period after the walk that I felt normal, and even 5 hours later I still feel really good.  I need to take more walks!

I've decided to work from home this week while my mom is here.  I can accomplish everything that I need to do from home, and it's great to have my mom around to feed me.  I sound like an infant saying that - I need help feeding myself - but I think I really do.  When I'm hungry, I'm hungry and I don't have the energy to make myself food.  I need it now!  And when I'm working, I don't have the time to make my food.  I need my nourishment, and I right now I need my mommy.

Ok, it's debate time - and Go Bears!

1st Chemo Treatment

On Wednesday, my mom, dad, and stepmom piled into the car to head to Duke.  We drove to Cary, NC to spend the night with my dad's cousin and wife, whom I consider my aunt and uncle :)  We had dinner with my cousin, and another aunt and uncle. It was nice to see the family, and it was so very nice to have a place to stay close to Duke.

Our day at Duke started with a 9am arrival time (10 mins late) to the Lab area.  We waited about 30 minutes before my pager went off.  My dad came went back with me to get my blood drawn which will be used as a baseline.  They will run a CEA test, which can sometimes be used as a baseline for cancer tracking - or not, so don't get your hopes up.  They also told me that the redness of the skin around the portacath was an aversion to the adhesive during surgery - that wasn't normal!  I thought it was just a damn big bruise!  It's gotten so much better, but it was also nice to hear that this wasn't normal :)  So I need the super sensitive adhesives.  They inserted a needle into the port in my chest, applied adhesive around it to secure it, and the taped the short tube up until I needed it for dispersion of the chemo via IV.

Then we headed up to the GI Cancer Clinic to met with Dr Zafar.  After another 30 minutes or so, I was paged and we all headed back.  Fortunately the rooms are big enough to have 4 people, plus the resident and doc in the room :)  The resident came in first and explained what was going to happen today.  About 10 mins later, she came back with Dr Zafar.  He explained the possible side effects of treatment and what to do (page him, leave a message, vs send an email).  He explained how he did not want to get an email explaining how I just woke up off of the bathroom flooring having passed out.  That would make him pass out and then where would we be?

We were instructed to check out of the clinic to schedule another appointment for chemo in 3 weeks, and then we could go up to the Chemo Lab and check in for treatment.  I mentioned that our appointment wasn't until 12:45pm so we were thinking about going to lunch, which was fine too.  We were also instructed to go downstairs to the pharmacy and pick up the nausea meds that I was getting along with the Xeloda, which is the oral chemo that I'll take for 14 days (with 7 days off).  At the pharmacy, the guy taking my info told me that my prescription service, CVS CareMark, sometimes doesn't allow dispersion of Xeloda on site, only via mail order. He said he would call me if there were any issues with the prescription.  More on this later...

We headed out to lunch at a French bistro, La Rue Cler, and had yummy, yummy, yummy french food. And we were almost 45 minutes late to the chemo appointment - oops!  We sat around for 45 minutes or so, while they mixed my chemo treatment, and then i went back with my mom.  They hooked me to the IV, and first dispensed 20 minutes of steroids, then 30 mins of calcium magnesium, then 2 hours of Oxaliplatin (the chemo), then 30 minutes of calcium magnesium, and then the flush my port with saline and heparin to prevent blood clots.

During this three and a half hours, I was in a nice little infusion room against the window, with a comfy recliner, and warm blanket, and a TV (cuz daytime television rocks!) My mom had a smaller recliner and a warm blanket as well.  We took some short naps, but kept being interrupted by the beeping of the IV whenever the drip ran out at 20 mins, then 30 mins, then the pharmacist came back to discuss the side effects in great detail with us.

My mom switched out with my dad for a bit while my stepmom ran downstairs to the pharmacy to get my meds.  She came rushing back through on the phone telling us each to perform some task because of the prescription problems.  The pharmacy guy early decided NOT to call me and inform me of the pending issue with getting the Xeloda.  So I talked to CVS CareMark and got instructions to get a prescription to them from my doc, which my dad pager Dr Zafar to ask about starting the Xeloda later than anticipated.  I was totally annoyed with all of that, and my health insurance support contact from Aetna that calls to check on my progress through this journey was very apologetic today when I told her about this debacle because that was something she was supposed to assist with, but didn't realize that I was to take Xeloda.  She made up for it by calling CVS to check on the status of the prescription.

Side note on this "health insurance support contact" from Aetna.  Is it weird that I'm getting phone calls from my health insurance company to "talk" about all of this?  It's all confidential, but it's Aetna, so it's not confidential to them.  It just feels a little too "in my business", but I feel like I have to talk to them to "play the game" with the insurance company.  Don't get me wrong, I am extremely grateful to have excellent health insurance to cover all of this, but this just seems a little too big brother-ish.  Maybe it's just me.

Then it was all over and we headed home.  I immediately felt a little tingling in my hands - that's the aversion to cold.  And on the way home, the indian food leftovers tasted a little less spicy.  I drank some room temp water and it was tingly in my mouth.  I was hungry and munched on my snacks during the car ride home but also felt this new sense of fatigue.  I wasn't tired enough to sleep - just tired.

I also had a light dinner of soup and hot tea, and then headed to bed.  I slept a bit poorly.  I was cold when I got home, but hot in bed.  I tossed around every once in a while instead of sleeping the whole night through.  I awoke about 9 hours later and was awake, but not as refreshed as I have been lately.

The day started out well, with the exception of the result when I forget not to touch cold, or even cool, items.  Even the glass of water that was sitting out all night was cool to the touch, and therefore a bit tingly on the fingers.  Such a weird feeling.  I wanted to wash my hands and I usually just turn on the cold water, because it's never really cold water in the summer/fall, and then stick my hands under to get them a little wet.  Boy that is a shock of pins and needles to the hands - OUCH!  I can't go in the refrigerator nor the freezer.  I've got to buy some gloves to get around in the kitchen.  This is gonna get old real fast.  These are even more barriers to me actually doing things in the kitchen.  It's like I'm just not destined to cook.  Where is my cooking house boy???

I felt like being productive, so I started the day by downloading some of the pics off of my phone into iPhotos, since I'll be getting an new iPhone 5 soon.  Then I started working a bit, and ended up going all day.  I've got so much work to catch up on, and I felt like working.  After lunch the nausea started.  I thought it went away for a little bit, but then it came back.  I took a nausea pill around 3pm and there really hasn't been much change.  It just feels crappy, but not debilitating.  I could still work, although I bitched to colleagues about my nausea (just I like to bitch about my uncomfortable state).  I felt hungry every once in a while, and that seemed to help.  And then I had a bite of sugar and that really seemed to liven me up.  So I think sweets will bring on appetite.  Note to self, do not eat sugar until food is ready.

I also had a mild, dull headache for most of the day.  So the side effects are mild, nothing I can't deal with, but it will take some getting used to.  This is a new normal, and hopefully I will only have to deal with all of this for less than a year.  Oh, and I think i'm losing my taste buds - damn it!

Tomorrow I need to get move around more.  I need to exercise, although I was informed that I can't lift weights heavier than 5lbs with this portacath.  So that limits my personal training sessions.  I'll have to see if PT will even be worth it if I so limited with weights.  But I can still walk/run on the treadmill, and use the sauna and steam room at the club.  I NEED to get back to the club and into a routine again.

And I need to figure out my food situation.  I have this awesome meal from Nourish tonight. Nourish is this healthy food service that delivers one a week.  You choose from a menu that is posted Monday afternoon, and this place is so popular the menu is sold out in less than 5 hours every week!  Tonights meal was Falafel with grains and excellent raw vegetables.  And it tasted like cardboard to me :(  I was so disappointed.  I know I still have my salty and sweet tastebuds, but I wonder if that's it.  I get this pang in my jaw during the first bit of food - kind of like the sour feeling when eating a watermelon jolly rancher.  It's very weird.

Wow, so that was one help of a post.  A lot has happened over the last 48 hours.  And so much more to come.  I'm still in good spirits but just a little shocked by the side effects.  And I'm a little more nervous about the side effects of the Xeloda that I will start tomorrow night.  Hand/Foot Syndrome, which is basically like getting a sunburn on your hands and feet. yay!

So one chemo treatment down, only 4 to go before we re-evaluate the situation.  I can do this :)

much love,
Sarah xoxo

Next Phase

Tomorrow I will go up to the Raleigh-Durham area for my first chemo treatment. I met with the homeopathic oncologist today, and I'll write more about that in another post, but it was a good meeting. My mom flies in from Chicago, and my Dad and stepmom will all join me.  We'll drive down to Cary, NC tomorrow afternoon to stay with my Dad's cousin and wife.  We'll all go out to dinner with my Dad's brother and wife, and another cousin in the area.  It'll be really nice to see everyone, and I'm so thankful to have family in the area during this.

Our appointment on Thursday is at 8:50am.  1st appt - Labwork - get my blood drawn out of my fancy new portacath - yay!  9:20am - 2nd appt - Doctor's visit - I have no idea if this will be a long appointment or not.  Will we get the results from my bloodwork that quickly?  What else is there to discuss for the 1st appt?  Who knows.  12:45pm - 3rd appt - chemo clinic.  Hook me up to the chemo IV and let it go.  I hear that this should take an hour, but they could administer it slowly, so again, who knows how long this will take.  I'll have pills to also take for two weeks, and then I'll have one week off.  Rinse, repeat.

We're supposed to do this for 3 months, so I think that's about 5 sessions.  Since the IV treatment is usually every two weeks, there's a possibility that the side effects of it will be less intense, since I'll have more recovery time in between.  The IV treatment is the one that will cause me to lose feeling in my hands and feet, and be extremely sensitive to cold temperatures.  And BTW, I'm already quite cold.  I've noticed how much the weight that I lost kept me warm.  I lost 30 lbs in a year (20 of which we because of my effort in exercise and better diet).  Why is there a downside of losing weight?  Not cool.

I will get better at blogging because I think it's the best bet for me to chronicle my symptoms and side effects.  Hopefully I can follow through on this, so feel free to nudge me for some motivation :)  Because my whole body is going to change, nothing will be normal anymore, so I won't know if a side effect is normal.  And apparently I need to note these changes.  So, I will try.

More soon,
Sarah xoxo

PS - I have a binder full of women.

First Annual Pumpkin Carving Champagne Brunch

Years ago I went to this awesome pumpkin carving brunch and I've always wanted to through one myself.  My cleaning ladies were were coming on Wednesday, which means that'd the perfect time to have people over.  And I've decided that Fall is my FAVORITE season.  Oh Target, why do you make it so easy to buy holiday crap?

I've got window sticky decals, table toppers, pumpkins and pumpkin carving kits, and planned the menu.  I also coordinated the distribution of cooking to my dear friends, saving the French Toast for me to make.  I know better - I really do! I should have asked for help with the French Toast, or not even made it.

So when a friend came over and offered to help, I totally accepted. Poor thing had to use my weird electric burners (she's got gas burners - jealous), my new steel pans, and coconut oil.  FYI coconut oil apparently has a very low burning point, so we kind of smoked the party out.  Scary thing was that the smoke detector never went off, and the place was more smoky than when my cats tried to kill me (seriously!).  That was the balcony portion of the party filled with ceiling fans and standing fans.  It was a beautiful Sunday morning.

Brunch was awesome.  The mimosas were awesome.  And the pumpkin carving was awesome.  Check out the photos:

The Mad Hatter

A colleague that I worked pretty closely with died of cancer on Thursday evening.  He was diagnosed 6 months ago. He leaves a wife and 2 small boys.  He liked hats, and used to call me funny names based on my last night (too easy, but I couldn't help laughing!).  This hit a little too close to home for me and Friday morning when I read it on his CaringBridge site, I kinda lost it. I was a hot mess and couldn't stop crying.  I showered, moisturized, and might have even made my breakfast smoothie before realizing that I needed a personal day. I thought I might get on a conference call and break out into tears - and that just wouldn't be professional, now would it?  Could you imagine being on the call where the someone just lost it?  That'd be a great story to tell.

My stepmom came over so I wouldn't be alone, which was so incredibly sweet and thoughtful.  I've noticed that I like having people around me during all of this.  I took a nice, long nap, woke up when the fire alarm inexplicably went off in the building (yay!), made lunch, then planned my dad's birthday celebration for the evening.  It ended up being a really nice evening :)

Looking back, I think this was the first time that I felt vulnerable to cancer.  I've gotten over that hump and am back to my optimistic self, but ugh, I don't wanna feel like that again.  So I don't wanna hear cancer stories that end badly, k?

Cancer sucks
But I'll still win
Suck it

Is that a haiku?

RIP Phil - you'll be dearly missed.

My Portacath

Last Wednesday (when I actually started this blog post)  I went back to CMC Pineville for outpatient surgery to get my port-a-cath installed.  "Installed" sounds so weird, like i'm getting a new car stereo installed.  Does this thing come with bluetooth?  I'm once again impressed with the staff at CMC-Pineville.  Seriously folks, if you need surgery, go here.  They rock!  My doctor is a rockstar too - Dr. Thies.  The staff spoke very highly of him, and I think my dad has a little man-crush on him.

So I've got this thing in my chest now.  It's a catheter to my heart.  It's beneath my left collar bone, right at the place where my bra strap hits.  Check out the pic below of what it'll look like when the insertion scar heals.  It's this round plastic thingy that they will insert a IV into and it's supposed to be a ton more comfortable than getting pricked in the arm.  Plus, it's easier on the veins.

Well, it's a bit uncomfortable right now.  I really hope that the soreness goes away soon.  This will help significantly in the distribution of the chemo, since it goes to the best distribution method of my body, the heart.  Weird, huh? Over the last couple of days, my body has made it very clear that it knows there is a foreign "something" in it.  It's healing slowly, but the bruise is crazy.

I've been applying this awesome salve that my brother and sister-in-law made a few years ago for Christmas.  It's with Arnica and Calendula and other awesome herbs.  And then my friend gave me some Lanacane cream that's super powerful.  Both have been really helpful.  But man, they placed it in the most inconvenient place - right where my bra strap falls, like 2 inches from my armpit.  Being a chic sucks sometimes - pfft :)

Juicing

In my last post about my dear mom, you learned the complexity of juicing.  Some of you might not know that I HATE mornings.  Ok, I HATE waking up.  So the idea of adding one hour of juicing to my morning routine did not go over well with my inner scheduling diva.  We're currently looking for alternatives, so I asked my brother which option would be better - use the Breville or juice at night and store the juice for a longer period of time.  The thing that I'm trying to figure out is which method will allow me to intake the nutrients that my body needs to stay strong while also retaining my sanity.  The centrifugal style of the Breville kills a lot of nutrients in the spinning, which heats up the juice.  Storing juice for an extended period of time also kills nutrients.  So which is better?

My younger brother, whom I lovingly call Joshie at times (because I love him sooooo much!), had some very good advice.  Try both options and let your taste buds tell you.  So I tried the Breville the other morning, and I noticed all the kale, and romaine, and ginger didn't even get much of any liquid our of the juicer.  It's all stuck in the pulp!  So I took the pulp out and put it in the press and got almost 2 cups of juice out of it!  And after all that work, it tasted like crap.  It was missing soooooo much of the flavor that the Champion gives me.  

So I guess the decision is made, right?  I should juice in the evenings, right?  Wrong!  I'm tired in the evenings.  I don't want to spend an hour and a half juicing and cleaning at night.  So I used the Breville again, and just couldn't help but press the pulp, and I think it's probably taking the same time as it would to just use the damn Champion.  I need to prep the night before better and get all stuff ready - maybe that will get me to do it.  I'll try that tonight.  Wish me luck!

One more thing - you might wonder what I juice.  Well, it's cucumbers, kale, romaine, ginger, carrots, pears, broccoli stalks, and spinach.  Someone called it salad in a jar, and it totally is.  And it's also amazingly tasty - who knew!!!

Sarah

xoxo

My MoMMa

My mom went home to Chicago on Sunday after being with me for three weeks.  Some of you might be saying to yourself "OMG three weeks with my mother, I could never do that!" - but not me!  I'd have my mom stay longer if I could.  My mom took such good care of me over these last three weeks, I have no idea how I've lasted this long without her!

My mom cooked all my meals, packaged lunches and snacks for me to bring to work, and juiced for me.  The juicing is probably the biggest deal in my mind.  My mother and brother researched juicing and decided that my nice, new Breville juicer wasn't good enough for me.  So Josh (my bro) sent me his Champion juicer, and my mom bought me a juice press.  So let me explain the process of juicing to you now.

The Breville is a centrifuge juicer - you put something in, the blades shred it to a pulp, and the centrifugal spinning pulls the juice out and keeps the dry pulp in to dispose of later.  Now the Champion has a single spinning blade where the veggie gets pulverized and then pushed out, pulp and all.  You collect this pulp in a container (any container will do) with a cloth over it.  Once the cloth fills up, you stop juicing and wrap up the cloth and squeeze out as much juice as possible before putting it into the juice press.  The juice press is manual hand crank press that literally presses the juice out of the cloth (so the cloth is the strainer).  The press has over 2 tons of pressure.  And then start over again.

My mom was making 5-6 8oz servings of juice a day for me, all at once, and then packaging them up in these cute, little 8.75oz glass jars.  Sidebar - did you know it's better to store food in glass than plastic tupperware?  Anyone want my old tupperware? It takes approximately one hour every day to do this juicing, and then the clean up is a prolly another 30 minutes.

So my mom would do all this juicing every morning for me to be able to have fresh squeezed juice in the morning and a few glasses to take with me to work.  And then she'd make me a fruit smoothie for breakfast and send me on my way to work with my lunchbox (actually it was usually two lunchbags filled with juice, alkaline water, snacks, and my lunch).  Isn't she amazing???

My mom fell right back into the caregiver role and I fell right back into being the sick teenager laying on the couch asking her to bring me a spoon because I didn't want to get up.  Boy, did I love it.  And now she's gone and I have to do all this stuff for myself now.  Pffft, growing up sucks.

I love you MoMMa!!!!!

Alternative Medicine

In my last post I mentioned going to a naturopath, or you might have heard the term homeopathic doctor.  Let me give you some background on my thoughts on alternative medicine.  My family went to a homeopathic doctor for certain conditions growing up.  For instance, when I was 12 or so, I had this weird outbreak of warts all over my body.  It hurt to rest my elbows on a table, and you can imagine how embarrassing this was in 7th grade.  We went to the conventional doctor, and his solution was to scrape them off using a scapel-type blade. OMG that hurt, but yes, get them off of me!!!!  I still have one scar on the back-side of my thigh.  But they came back, immediately, and a little more aggressively.  So on to the homeopathic doctor we went.  Homeopaths treat the whole body, not just the symptoms, so there are a lot of questions that are totally unrelated to what's wrong - for instance, how are you eating, sleeping, pooping, etc?  And you walk out with these little pills, I call them sugar pills because they're sweet, and just put them under your tongue a couple of times a day.  Miraculously the warts disappeared, very quickly.  It was like they melted away.  This is why I believe in a balance between conventional and alternative medicine.

Let me be clear - I also believe in conventional medicine.  Antibiotics have helped me several times in my life, although I also think that our society relies a little too much on them.  Therefore, I usually try to treat something alternatively before going to a conventional doctor.  I'd say it works 50% of time.  Not bad :)

I've always wanted to find a naturopath in Charlotte and had never gotten around to it.  My brother found one for me, and I had a brief consultation with him to talk about my needs and his treatments.  He was specific that he doesn't treat cancer, so he referred me to a certified homeopathic oncologist in AZ that does long-distance consultations. We also talked about treating my body for the surgery and making me strong for the upcoming battle.  I scheduled a follow up with him to begin the process of talking about my body. As I described earlier, homeopathy treats the entire body, so there was a 3 hour session of talking about everything from sleeping, to dating, to family, etc.  We came out with a plan for treating my colon, to help it get stronger, and detoxing my liver since it needs as much help as it can get.

Many of my family members have strong beliefs in the benefits of alternative medicines, which also means that some do not believe in using conventional medicine.  I've received a lot of information from various friends and family on various treatments using alternative medicines.  In this day of information overload on the Internet, you can imagine all the stuff that's online.

My mom has been staying with me over the last two weeks, preparing meals and juicing to strengthen me, and there was a point where if she wasn't cooking, she was sitting in my lounge chair with her iPad googling "cancer cures".  I asked her to write down all the things she wanted me to research taking, and the list was over a page long.  If roles were reversed, I know I'd be googling the same thing, but this was a wake up for me - I need to define what I want.

I'm already taking Vitamin C (10,000mg), Fish Oil, melatonin and probiotics.  My brother sent me Asea and Protandim, and I don't really know what they are, but they don't interfere with chemo.  I'm drinking 1 tsp of Baking Soda twice daily for one week, then only 1tsp once daily, to increase my body's alkaline levels (since you want to be alkaline, not acidic) - and taking periodic baths with 2lbs of Baking Soda.  I got liver detox, colon strengthening stuff, and phosphorus 30 from my homeopathic doc.  I drink lemon water in the morning to jump start my colon.  I'm drinking 5-6 fresh juices a day, and we've just moved from carrot/apple to green juice.  And I'm eating like a gluten-free vegan.  Oh, and I'm peeing on Ph strips a few times a day to measure my body's alkaline levels.  I'm tired of hearing all the other things that I should be doing.  And I'm tired of having to think, research, rationalize whether I believe in any other alternative treatments.  Haven't I changed enough? Yes, I'm fighting for my life, but I need to actually enjoy my life too.

I came to a conclusion - I believe in chemotherapy.  I will be getting chemotherapy on 10/18 for three months.  I will also be meeting with the homeopathic oncologist on 10/15 to discuss homeopathic treatment for my body during chemotherapy, and then I'll decide if I will add anything else (or remove anything) from my "home treatments".

I know some friends and family may not agree with my decision to have chemo, but I ask that you please respect it and not try to talk me out of it.  The last thing I need is to not believe in my treatment.  I need to be optimistic, and any contradictions at this point will not be helpful.

I also ask my friends and family that may not agree with my alternative treatment to respect my decision as well.  Hearing about how some quack doctor blah blah blah is not helpful either :)

I know that each of you are only thinking of helping me, because you love me, but the best thing you can do right now is to support my decisions and be a cheerleader for me.  I need positivity in my life, and I'm constantly amazed at the amount of love and support that I've received.

Thank you!
Sarah xoxo

Guess who's got a date?

...date to start chemo, that is! I went in for my follow up visit to Dr Thies, my local surgeon that performed the colectomy.  He said my wound was healing very well.  So I can do yoga now (yay!), I can take a bath (yay yay!), and I can start chemo the week of 10/15.

I emailed the Nurse Practitioner for Dr Zafar at Duke that we met on Monday, really nice, informative woman named Leigh, and told her all the info:

• I want to have all treatments at Duke
• I want to go with the oral 5FU instead of the IV
• I want to get my port placed by my local surgeon, instead of having to go back to Duke
• And I'm able to start chemo the week of 10/15

I also asked for a recommendation of what day of the week to start chemo.  Unfortunately there are no clinics on Friday or Saturday, and Leigh and Dr Zafar are in clinics Monday mornings and all day Thursdays, although Leigh is in clinics Monday - Thursday, so I can do it without Dr Zafar.  She recommended Thursdays since patients that are working like to have the weekend close to rest.  And she mentioned that we can always switch the days up later if something else becomes more convenient. So I'm leaning toward Thursdays.  

She also said it would be great to have my port "installed" locally.  A port is a small catheter to my heart that will be placed under the skin by my collar bone.  This will allow easy administration of all drugs, fluids, etc, and allow them to take blood from me easily.  So no more IVs, and getting stuck with needles - yay!  Dr Thies informed me that I'm gonna have to clean/flush this sucker - ewwww! And that there is a risk of inflection if you don't clean it well and often.  So having a local doc around to assist with that makes me happy :)

I also visited a homeopath naturopath yesterday, so I'll tell you more about him later.  But I've got to start getting ready for work.  Yes, I'm back in the office!  I went back on Wednesday and arrived to a decorated cubical.  My teammates rock!  Here are a couple pics :)

My New Blog v2

I accidentally deleted my earlier post (oops), so here's the replay:

After additional research, I decided to add this blog in addition to the CaringBridge site.  I recognize how some folks rely on RSS Feeds to stay up-to-date, and it's only a matter of cut and paste to manage both :)  If you're not familiar with an RSS Feed, check out the Google Reader.  It enables you to subscribe to a website so you can then read new "articles" all in one place.  I use Google Reader to stay up to date with all the different web sites and blogs about Mobile Banking, which is my field of expertise.  It's quite handy - check it out!

Also, I've had a request to create a blog entry about symptoms for issues with your colon, and I'm all for education and awareness.  So look for a posting on pooping - coming soon!

Drop me a line, or a comment, if you've got a question, or a suggestion, for a future blog entry.  I'm game!

TTYL
Sarah xoxo