APRIL 29, 2012

BALD!

Well, I did it.  I'm now bald.  And, so far, it ain't too bad.  :)  I'll post more pictures when I have them, so for now, this will have to do.  

Yesterday was emotional, which is what I expected.  I woke up with a killer headache, which didn't bode well for the day.  After getting the house reasonably picked up for the event and getting everyone ready, I washed and styled my hair for the last time.  It was rough, thinking about it.  As I'm running my hands through my hair, washing it in the shower, I was having a hard time not breaking down in tears.  It's silly - with everything I've been through, you wouldn't think that this would bother me.  But, it did.  More than I care to admit.  

Anyways, time came around when everyone started arriving.  I figured that making it a fun occasion, rather than a sad one, would make it easier.  I'm so glad I made that choice.  It was emotional to have everyone there, but in a good way.  Kind of like, look at all these people who took an hour out of their day to come over and support me.  I am so lucky!

My amazing, amazing friend Natalie took family pictures of us, pre-shaving.  You can see more of her work here.  Then, we couldn't delay the inevitable any more, especially since everyone was there.  I had a breakdown, and then sucked it up.  Let's do this.  

My breakdown was hard, but necessary.  It's one thing to be a cancer patient.  It's a totally different thing to *look* like one.  As a woman, your hair becomes a fundamental part of you.  It's as essential to you as your clothes, your make-up, your face.  To know that I was willingly, purposefully shaving it off was hard to take, in spite of the fact that I made the decision to do it.  

Once I was over that, I was able to say it was definitely time.  Julia took the first swipe, and Kevin got the next ones.  They both really had fun with it, and I think it helped to have them involved.  They both seemed to take ownership of the event, and of the fact that Mommy didn't have hair anymore.  Both kids think it's pretty cool that they shaved my head - as Julia says, not many other kids can say that they shaved their mom's head.  :)  

We got photos of me with hair, mid-shave, punk style, with a mohawk, and then bald.  We got photos of the wigs (one normal, one fun!).  I can't wait to see them - they are going to be so much fun.  

I decided that, if I was going to do this, I might as well do it right.  So, after cleanup and lunch, my beautiful friend Akemi, Julia and I headed to the mall to the MAC store for some make-up retail therapy.  My friend Cher made a phone call and, in spite of it being prom season and prom night, Stacey at the store took me right in and *hooked me UP*!  It was amazing - the picture above is a result of her fabulous work.  I did pick up some stuff to try to recreate the look, if I want (which I do).  

A couple of realizations from yesterday:

 - a shaved head gets cold (and hot) a lot quicker than a fully haired head;

 - despite my fears, I don't look horrible with no hair;

 - people will look at your oddly when you go to the mall with no hair;

 - other cancer survivors help lift you up and support you when you go shopping with no hair;

 - wigs are hot;

 - having your kids help shave your head makes this process (and acceptance) a lot easier.

Much love to the people who helped me (in person and virtually) through yesterday.  It was only through the laughter, tears, positive feedback, amazing support, and hugs in person and on-line that I was able to get to today in one piece.  Now, I'm off to make today productive, and to try my hand at sassy make-up.  :)

Comments:

Melanie said...

Michelle..... I know this process was probably one of the more difficult of all this you are dealing with but take it from the East Coast.... you look Mah-valous! Seriously! I know most women don't think about shaving their hair for just the heck of it, but with the right attitude you have the look as if you did it just to have a new "look". :-) Here in Syracuse we recently had a St. Baldrick's Day event, so the are quite a few bald men, women, and even children running around. And I have to say it is great to see the support everyone has given to "the cause". And I'm so glad you could have a moment and take some time to make it fun.... if it has to happen, at least yu can look in he mirror and say "Look, stupid cancer! You don't get to control this! Gotcha!" Love and miss you.... wish my finances were better to come out and see ya. Maybe if my job hunt improves I can sneak out this summer...

April 29, 2012 at 6:18 PM

 I'm Nic. said...

Despite the emotions of yesterday, you still found time to update your readers. You are superwoman. Superwoman with eyes that are super gorgeous!

April 30, 2012 at 6:36 AM

 Ana said...

You look very pretty! You shouldn't worry at all, this hair cut shows off you eyes!

April 30, 2012 at 7:18 PM

APRIL 27, 2012

Dental Issues During/After Chemo

One of the lessons I learned the hard way last time was that chemo has a profound (negative) effect on your dental health.  Whether your oncologist tells you or not, you need to take the lead on making sure that you protect your teeth during and after chemo.

I'm not talking your regular flossing, brushing, and 6-month cleanings.  I'm talking about making sure that you look into a weekly fluoride treatment to help strengthen your teeth.  Prior to my last bout with chemo, I had never had a cavity.  Ever.  After chemo, I had several.  My dentist at the time said that they are a direct result of the chemo treatment.  Great.

He recommended that, if I ever had to go through it again, a weekly fluoride treatment could be helpful.  So, I contacted my dentist this week, and he has written me a script for a fluoride rinse that I'll actually use daily.  In addition to that, he recommended that I come in monthly for a routine cleaning.  I am going to talk with my onocologist next week and ask if he can write me a prescription for this so it can be covered by insurance - right now, if it's not, the cleaning will be $90/month.  Yikes!

Please, if you're going through cancer treatment, consider talking with your dentist about some form of preventative treatment for your teeth and mouth.  Believe me, after going through chemo, you don't want to have a dentist tell you that you need 8 or 10 cavities filled.  :)  I tried finding specific recommendations from a reliable source, recommending preventative dental care during chemo.  Unfortunately, there doesn't seem to be anything, which makes me a little sad.  So, maybe I'm the first.  Please - talk with your dentist.  This is important - seems silly, given that you're fighting for your life, but it's important.

Comments:

 Dcaryl said...

My husband agrees that the fluoride treatment is a great step towards protecting your teeth. He also believes the monthly checkups are wonderful, as cavities during chemo pop up really fast. He said more frequent X-rays of your teeth would also be a good idea. There is not much out there on this, you are correct. Different types of chemo can have different problems associated with it in regards to dental health. it sounds like you have a dentist that knows what he is doing.

April 27, 2012 at 10:05 AM

Later:

Hair Loss, and a Decision

*sigh*  I thought I was ready for this decision.  I thought that, when the time came to lose my hair and make a decision to shave it off, I'd be much more prepared.  I know that I want to be in charge of this, but being in a situation where I feel like I have to really make the decision - well, it's harder than I thought.

Over the past two weeks, I've noticed that my head has been so much more sensitive than it ever was last time.  It just feels so tender, all the time. Not painful, just tender.  This week, it's been itching me in ways I can't begin to describe.  I feel like I'm going to lose my mind from the itching.

I did some research.  Apparently, hair loss (thinning is what the manufacturer says) is pretty common with Folfiri, specifically the Camptosar/Irinotecan.  When I put the question out to the experts on facebook, the response was pretty definitive that my itching is a precursor to hair loss.

Crap.

So, today's plans for having my hair re-blue'd have been sidelined.  Instead of dyeing my hair, I'll be shaving it.  I think the decision is made, in my head.  My heart - well, that's another story.  I'm ok with it - I really am.  But, I'm going to cry.  I can totally see it happening.  I'm almost there already.

The more I think about it, the more I feel like it's the right thing to do.  I am planning to take the kids to CTCA this afternoon after school to have Julia help me pick out a wig.  I don't know if I'll wear it, but she can help me pick something out.  And, I'm going to let the kids help shave my head.  I think that will help make the decision and the suddenness a little less shocking.

Just talked with my mom and had a little cry.  Feeling better.  I know this is what I need to do.  Itching sucks, and as I told my mom, I've traded the neuropathy and cold sensitivity from the Oxalipalantin with hair loss from this drug.  Sounds like a pretty good trade to me.

All right - off to learn how to tie a scarf.  :)

APRIL 25, 2012

Random, blabbering thoughts

Side effect update:  Slept fairly well last night - was only up twice, which is an improvement.  I woke up with a headache, though, so I'm sitting on the couch waiting for the Advil to kick in.  *sigh*  Gotta love chemo.

Random thought #1:
One of the things that I'm having trouble remembering this time around is that things are different.  As much as I put words to the concept that this time 'round isn't like last time, I find myself continuing to compare what happened this time to what I expect will happen this time.  I think this is both good and bad.  Good, because I'm aware of the way my body tends to react differently than everyone else to chemo, meds, etc.  Last time, I learned that if there's a side effect of chemo, I'm probably going to get it (even if it falls into the "only 1% of people have this happen" category).

Now, having said that, last time, I was getting full doses of chemo every two weeks, which meant the chemo built up in my system and I was mitigating side effects with more side-effect-inducing prescriptions.  This time, I have an entire team on my side, helping make sure that my side effects are as minimized as much as possible.  Last time, I was sick all the time.  This time around, I feel really good after a few days of ickiness, and even then, (with the exception of the last day this past round), the ickiness isn't terribly awful.

I find myself going back to the same thoughts, feelings, expectations of last time, almost to the point of ignoring what I know in my head is right.  During the down days last week (Wednesday and Thursday), I found myself feeling so alone, so morose, so depressed.  I had to remind myself (isn't that odd?) that I wasn't alone, that I have an entire army of people behind me, all over the world.  I found myself back in the very first days of chemo last time 'round, where I thought I was the only person going through this at the age of 30-something.  Thank God for social media - you all remind me daily that I'm *not* alone, that I'm one of  many.  One of a courageous, amazing group of people.  So, thanks.

I'm really trying to keep the past in the past, and remember that this time will not be like the last time.  This time will be better - it will be different.  I don't know what the end result will be, but I'm hopeful that Mission:Remission will be successful.  I'm hopeful that I've found a team in CTCA that will provide me with the absolute BEST chance at kicking this thing in the ass, once and for all.  And, I'm so grateful to have y'all on this journey with me.

Random Thought #2:
I have had some people contact me, saying that they meant to get in touch but were afraid or didn't know what to say to me.  I've had others ask me what they should say to a newly diagnosed/rediagnosed friend or family member.  Oftentimes, people will not contact the person, for fear of saying the wrong thing(s).

My advice to you?  Make the phone call.  An email is nice, a text is okay.  But, if you have a few moments, make the call.  You may get sent to voicemail; leave a message.  Tell them that you are thinking of them.  Just say hi.  Remind them that they don't need to call back (and mean it).  When you say "Is there anything I can do?", *mean it*.  Consider offering to do something tangible - one of the kindest things people have done for me is offer very specific things.  If you aren't a great cook, offer to clean a room.  Offer to take the kids to the park.  Ask when you can help with laundry.  Be very specific about what you can/are willing to help with.

Most importantly - don't forget about that person.  In my experience, tons and tons of people will touch base with you when they find out you're sick, and then it dies off.  (Disclaimer - I don't say this to get attention, or to have a ton of people call me.  It's just truth.)  Make a note on your calendar to call that person three months from now.  Then, just say hi.  You don't have to offer anything (unless you really want to), but let them know you're thinking of them.

On that note, I found this on-line (here), and it's quite accurate (for me) on how to talk to a cancer patient.  I hope it helps you.

1. I don't know what to say.If you're feeling uncomfortable talking to us, we can probably tell. The best way to dispel awkwardness is to admit that you feel awkward. It's not our job to put you at ease, but maybe you'll feel better if you confess.

2. This is the worst news ever!Of course you're upset to hear about your friend's diagnosis. It is totally fine to have strong feelings and to show them. But really, your friend should not have to reassure you or take on the burden of your feelings. I've kicked my family out to go cry in the waiting room during bad-news doctor visits. This is, first and foremost, my tragedy, and I can't be strong if the people around me are falling apart.

3. Is this a good time for you to talk about it?We're all smiles in cancer land. We get complimented all the time for our positive attitudes. But sometimes our optimistic public face is in danger of cracking. We want to know that you care about us, but you can help by not pushing too hard for The Real Backstory in, say, the grocery store check-out line. Tell us you want to know more, and let us decide when we're up for that conversation. And sorry, you have to accept it if we don't want to talk about it at all.

4. Here are some ways I'd like to help you.I like it best when offers of help are very specific. "I have a whole bag of fun wigs at home. Do you want to borrow them for a while?" or "I'm taking my kids out for ice cream later. Can I bring your kids along?" Then I can say yes or no without having to think of something helpful for the person to do. Also, when I get a vague offer of help and then I make a specific request, it makes both of us feel bad if the person doesn't want to do what I've asked.

5. Do you need someone to coordinate volunteers?The first time my cancer came back after a 20-year hiatus, I was a busy working mother and was totally blindsided by the whole thing. My friend Anne offered to coordinate parents at my son's school to make meals for our family. The coordination was a bigger gift than the food itself. If you're good at this, you might want to offer to coordinate the help that comes in. Offering to help with information control is also good. My partner does this for me. He's willing to take phone calls or answer email from concerned friends when I'm feeling like a hermit. If you can offer this, it might take a huge burden off of the patient.

6. May I pray for you?Many people find it comforting to know you're praying for them. To me it feels like you're proselytizing. But the rare person who asks me instead of TELLING me they're praying for me always gets a big fat yes. As long as you're not shoving your religious views down my throat, I am happy for you to pray if it comforts you to do so. Unless you know your friend shares your religious views, ask how they'd feel about having you pray for them.

7. You look great.We like to hear this as much as the next person, but please, only say it if it's true. We might be bald. We might be scarred. We might have puffy faces from steroids or bruises from having blood drawn. So if we look like shit and you lie about it, we can tell. But I do like to hear it when I look sort of okay.

8. No strings attached.I love to get letters, care packages, and email. It helps to feel loved, and I especially appreciate the people who let me off the hook. The emails that say, I wanted you to know I'm thinking of you but you don't have to write back. The phone calls that say, call me back only if you want to. The gifts that say, no thank you note is needed. I know I sound like a jerk. Someone sends me a gift and I can't even be bothered to write a thank you note? Returning phone calls is a burden now? But when I have very limited energy, I want to save it for my family and my garden and my writing. Cancer patients still have an obligation to be nice people, but maybe they don't have to follow all the social conventions perfectly right now.

9. Take cues.Listen to me carefully. I might have just told you some really scary news about my health, but what else am I telling you? Am I being blunt and painfully realistic? Am I being cheerful, downplaying the seriousness of the news? Am I avoiding giving you details? Your job is to follow my lead. You can ask questions, but if I give you vague answers you need to drop it. It means I've told you as much as I want to tell you right now. If I'm optimistic, be optimistic with me. If I'm in the mood for gallows humor, don't try to force me to look on the bright side.

10. Say nothing.That's right. I love it when people say nothing at all about my cancer. I'm tired of talking about it. I'd be curious to hear how other cancer patients feel about this, but I find it refreshing to be treated normally. That doesn't mean you should ignore my illness, but it can be a nice change to have an interaction with a friend where it just doesn't come up.

Above all, just do the best you can, and if you aren't sure you're giving the right kind of support, ask your friend how you can do better. Cancer patients may be walking an emotional tightrope a lot of the time, but we can recognize and appreciate good intentions, even if the things you say aren't pitch perfect every time.

This is another site I found outlining things NOT to say to a cancer patient.  Yes, I agree with them.  :)  There are a lot of them out there - feel free to look them up, and take heed from them.  Most are written by cancer patients, and are their personal feelings.  Thankfully, we are a vocal group.  

Okay - enough babbling from me today.  My headache has eased, and I'm going to get ready for the day.  Off I go - make today awesome.  I hope to.  

Comments:

I'm Nic. said...

Yes. I will make today awesome. Best advice ever.

April 27, 2012 at 7:43 AM

APRIL 24, 2012

Tuesday Update

Well, this weekend, the nausea subsided, but the light-headedness kicked up.  I'll take the light-headedness over the nausea any day.  It lasted about two days this week, Saturday and Sunday, and meant I didn't allow myself to drive on Saturday.  Sunday wasn't too bad, but Saturday - woah!  It was very interesting - I would be okay for a moment, then get a wave of dizziness.  Very uncool.  But again - MUCH better than nausea. 

Today, I feel great.  Lots of energy, in spite of not being able to sleep at night.  This is another side effect that kicks up during my off week.  I don't know why - I just have trouble getting to sleep and staying asleep.  It's not that I'm waking up with important things on my mind - I'm waking up with dumb-ass things on my mind, usually stuff that has no bearing whatsoever on anything.  Then, when I try to go back to sleep, it only lasts for half an hour or so.  Ridiculous.  The naturopath gave me something to try to help - I took it last night (no help), this morning and again about 15 minutes ago.  We'll see how tonight goes.  *sigh* 

Neuropathy has also started in.  It's different this time, in that it's kicked in sooner (two rounds in), and it's not as pronounced as last time.  It's pretty minimal - some numbness in the tips of my fingers, and sensitivity in my feet.  For example, the soles of my feet are more sensitive this week to the edges on the tiles on the floor in our house.  It sounds stupid, but they feel more pronounced, sharper.  I don't know that I can necessarily explain it.  But, I met with Dorion (the acupuncturist) at CTCA today, and he did some funky needles-in-between-my-fingers-and-toes thing, then hooked me up to some electric impulses.  Apparently, this will help.  I'm still uneasy (at best) about having needles jabbed into me, but I'm trying to keep an open mind.  :) 

In all reality, I'm feeling really good, considering I'm fighting cancer.  I have some other things to post about, but I'm tired.  Hoping I can get some sleep tonight - planning to blog more tomorrow.  Meantime, thanks again for everything.  Much love to you all!

APRIL 20, 2012

Friday Update

Well, after sleeping pretty much the entire day away yesterday and another good night's sleep last night, it appears that I'm returning to the world of the living today.  I woke up on my own this morning (well, after only hitting the snooze button twice), and was able to get the kids breakfast, get them ready for school, and drive them to school.  This is good news!

My kids didn't do too well yesterday at school.  Well, Jules appeared to be okay with it, but Kevin is really struggling with seeing me sick.  I got a call from his teacher yesterday, and he had a rough day at school.  When he got home, I asked him what was going on.  He said he was worried about me being sick.

As a Mom, how do you handle it when your almost-6 year old is worried about you?

Heartbreaking.

He seemed to be doing better this morning, and I'm hopeful that a return to a more normal routine this morning will help.  It's so hard, knowing that I'm the reason he's struggling.  I wanted to try to keep life as normal as possible for the kids, and it doesn't appear that I'm doing a very good job of it.  I know there isn't much I can do, given the circumstances, but it's still hard to deal with.

Anyways, I'm feeling better today.  A little light-headed (probably from the Avastin), so I'll be tracking my blood pressure the next couple of days, as that can spike due to the Avastin.  Stupid chemo.  Just took it - 100/68.  Interesting.  That's not high at all.  :)

I will say that my mental state is better this morning.  Yesterday, I had thoughts of "Why do *I* have to go through this" and "Is it worth it?".  Those thoughts scare me.  I don't like them, and they aren't me.  But, I feel like they are inevitable, and normal.  I feel like it wouldn't be right if I didn't acknowledge these feelings.  There are definitely times when giving up seems like the easier option.  What I'm going through is much more difficult than I ever imagined.  The first time, I had the blessing of ignorance.  This time, I have more knowledge, which is good and bad.  Good, b/c I know what's coming.  Bad, for much the same reason.  There are still a lot of memories that are dredging up based on something that someone says, something that happens, or a feeling I have.  I'm hoping that I can deal with them in the best way possible, and move past them.

Right now, I'm back on track mentally to kick this thing in the ass.  Yesterday was definitely a bad day - I wasn't in the right state of mind to do much of anything.  Having an anti-nausea drug cause more nausea and almost make you sick is awful.  But, I'm past it now (fingers crossed), and working towards feeling better in prep for the next round.

God, that sounds so ominous.

I had hoped that I would never have to utter those words again.  Next round.  I hate that I have to go through this again.  I hate that my family and friends have to help me do basic things, like make dinner.  But, I'm eternally grateful for their support and help.  I would not be able to make it through this without them.  There's no doubt in my mind.

All right - babbling done.  I'm going to log off and maybe (MAYBE) get a shower.  Need to think ahead to lunch.  And, Levi comes home tonight, so I'm happy about that.  He'll be home for a week (YEAH!), which will be awesome.  Hoping I feel better as time wears on.

Comments:

Tina said...

You are so strong, I know you will make it through this. It's good to be honest though, and acknowledge those feelings. I'm sure it must be very difficult to see your kids struggle, but they are strong too--they come from good stock! It's good to know that their teachers are looking out for them too.
Hoping you feel better and stronger each day--and no more nausea!
Hugs!

April 20, 2012 at 11:55 AM

 Whidbey Woman said...

Love you, Michelle. Stay strong.

April 22, 2012 at 8:22 AM

Later:

Meal Train Updates

I want to take a moment to thank everyone who has already helped us out with meals.  Everything has been delicious, and having those things ready for us has made me worry less.

I know some of you have signed up for meals next week, and I'm thinking that those dates were meant to be signed up for this week (I hope).  If that's the case, please let me know.

I'd like to ask you all to consider bringing meals only on chemo weeks.  I don't want to overwhelm anyone, and would like to maintain some semblence of normalcy (at least for now) during off-chemo weeks.  Having said that, frozen meals are welcome and will likely be used on off-chemo weeks (especially if I'm feeling lazy).  :)

So, the next chemo week starts Tuesday, May 1st.  That's going to be a very long day, and I likely won't be home until well after dinner time.  Having said that, my folks will be getting the kids from daycare and getting them dinner, baths and ready for bed.  If someone is willing to either deliver dinner on Tuesday night (either at my place, or my parents place) or delivery something on Monday night to be reheated on Tuesday, that would be awesome.

If someone was willing/able to help with meals May 2nd - 4th, that would cover the week.  Again, frozen meals are totally okay and welcome, as we have freezer space available.

The signup for the meal train is here, I think.  Please let me know if that doesn't work.

Hoping this helps; I have had a lot of folks ask how they can help, and this is definitely one way.  Until school is out, please only plan for meals that are dairy-free, as Julia can't have dairy during the week.  That includes pizza - sorry, and thanks for understanding!

APRIL 19, 2012

Round Two - Blech

Well, this round sucked.  Let me rephrase that.  I was good until about 7pm on Tuesday night.  I started to feel pretty nauseous and icky that night, and it pretty much kept up on Wednesday.  I was able to stave off the ickiness by supplementing my Zofran with Compazine and Ativan, so that was good, but the drugs make me woozy and tired, which I don't care for.

Pump was supposed to come off yesterday at 2pm, but there was an issue with scheduling and we didn't even get back to the infusion room until 3pm, and then I still had another hour of chemo left before they could start my IV fluids.  *sigh*  The nurse was able to get the doctor to prescribe IV fluids that were compatible with my remaining chemo, and she gave me an IV medicine for my nausea.

Let's just say that whatever they gave me should be reserved for people who are going to the deepest depths of hell.  I didn't react well, at all.  Rather than making me feel better, it caused me to feel worse.  My only saving grace is that I didn't get sick.  How, I don't know.  I should have - I probably would have felt better.  But, whatever they gave me did not help, at all.  I won't go into details, except to say that I'm still not recovered from whatever they gave me.  This morning, when I woke up and tried to get the kids ready for school, I was so tired I almost felt drunk.  The oddest feeling.  I don't care for it.

I'm starting to feel better, but I'm still tired.  I went back to sleep today after my dad picked up the kids to take them to school, and I slept until noon.  It's now just before 2pm, and I'm ready for another nap.  Thinking that's my next stop - who needs to shower?  :)

I'm glad that this round is over.  I'm hopeful that when we meet with the oncologist next time round, he's able to provide me with a better understanding of what they gave me, why I reacted the way I did, and how we make sure that doesn't happen again.  Mentally, this round was difficult.  Right now, I'm struggling with the thoughts of "Why me".  Those aren't easy to deal with, especially because I know there isn't a reason for this. It just is.

On a positive note, my amazing friend Karena contacted Rodney Atkins (who sings my favorite song, "If You're Going Through Hell") and asked him to send me a video of encouragement.  I had no idea, and the video came in yesterday afternoon, as I was going through hell.  Timing is everything, isn't it?

I can't figure out how to link the video he sent to me, but you can find it on my facebook page.  If that link doesn't work, look up my group "Mission Remission" on facebook - his video is there.

It's amazing.  I just can't begin to tell you how much it means to me that Karena took the time to pursue this, and that he took the time to do a short video, wishing me well.  He probably has thousands of requests like this on a weekly basis, and he took 18 seconds to wish me well.

So.  Cool.

On that note, I'm headed back to bed.  This stupid drug they gave me knocked me for a loop.  I'm hoping another nap will help.  :)

More later.

Comments:

Tina said...

Sorry you are having such a rough time. When I was on FOLFOX my brain was so foggy, and body so tired, there were days I could hardly get out of bed. After awhile I quit fighting it and just stayed in bed! I had my laptop, tv, music, window to look out--everything I needed for the few moments I could wake up. Of course, I didn't have young children to take of either--I would not have been able to! Sorry about the nausea, that is the worst! I'm guessing you are getting steroids and Emend along with the other 3 drugs you mentioned? I know it took all 5 drugs to get me through!
Hang in there--hopefully you'll be coming out of the valley the next few days and each day will get better!

April 19, 2012 at 2:47 PM

 I'm Nic. said...

Thinking of you lots. Like I've posted before, keep writing, we are listening. Your strength is admirable.

April 19, 2012 at 4:49 PM

APRIL 17, 2012

CTCA Days 3 and 4

Holy cow - I didn't mean to ignore my blog for this long.  I am so sorry!  I'll do my best to update the what's happened over the past week.  Yikes!

Well, Monday morning, I went into work to finalize my move and to the new facility.  It was also my last day before I went out on short-term disability.  The decision to go our on STD was not as easy as I though it would be, since I really like my job and the folks I work with, but for me I needed to mental break.

Tuesday morning, Mom, Dad and I went into CTCA for a meeting with the chiropractor, mind/body therapist, and later in the day, acupuncture.  The chiropractor  (Chuck/Dr McDonald) is awesome!  He's very concerned about making sure that he helps me in all areas, not just adjustments.  He did find some stuff in my back that needed adjustments, and they have honestly seemed to help.  He got some crackles out of my neck that were terrifying!

After that, we went off to meet with Steve for mind/body - he gave us some breathing techniques to help calm the mind, and they actually work!  I've also met with him once more (more about that in another post), and I really am glad he's on my team.  We also had a consult appointment with Dr Webber, the gastro dr.  Another amazing person that I'm glad is on my team.  He lost his daughter to cancer when she was 24, so he was really able to talk with my parents from that perspective.  I know/hope that helped them.  Dr. Webber was just amazing - kind, gentle, and another person I'm glad is on my team.

Once we were done with that meeting, Mom and Dad headed home, and I hung around a bit.  Had lunch with my friend Marisa in their marketing department, and then just chilled.  Went into acupuncture, with much hesitation.  I have never done it before, but I think I'm going to go back.  He's treating me for nausea, and I'm hopeful.  :)  It was definitely an experience - as someone who was petrified of needles, having them throughout my body (including one in my forehead, one in each ear, and some in my legs and arms) was definitely an experience.

Wednesday was treatment plan day, and the one I was most anxious about.  You go in, wondering what they are going to say, what's going to happen, etc.  We were supposed to meet with Dr Granick, but he had been double booked, so we met with Dr Shilte.  And, I love him.  He's awesome.  So kind and gentle.  The two doctors work with the same care team and they all work together as a team, so I'll get to know Dr Granick as we continue treatment.  Dr S spent a ton of time with my parents and I, reviewing and updating his notes, asking me a ton of questions, and answering our questions.  The good news is that my CEA level has gone down (yeah!!!).  Granted, they are comparing two different lab results, but the number went from 10.8 to 5.3 after one chemo!  So, it looks like the Folfiri/Avastin is working, and we are going to continue with that.

The thing is, we are going to continue it by making me my own chemo cocktail.  I didn't know they could do this, but they are adjusting my drug levels, meaning they can decrease some by 50% and others by 25%, to try to give me the best fighting chance without making my life miserable (now there's a concept).  They also adjusted some of my anti-nausea meds and added some naturopathic stuff to help with my diarrhea.  In addition, they added IV fluids during days one and three, to help me flush the system and hopefully help with the nausea.   Overall, we felt very confident with what we heard on Wednesday.  It was amazing to sit there for hours, and have them all answer questions, explain to us the individual chemo drugs and how/why they work, why we are taking certain drugs to off-set nausea, etc.  They also allowed me to push off my chemo until Monday the 16th, which was wonderful b/c Julia's 10th birthday was on the 13th, and I didn't want to be fighting off nausea, etc. while trying to celebrate her birthday.  Amazing - this balance they are allowing me is just so reassuring.

Mom, Dad, Levi and I all agreed, after that appointment, that this is a good move.  Now, the question is to see if they can walk the walk.  So far, so good.  :)

Comments:

Sharon R. said...

So I'm sorry, but I had to chuckle at you doing acupuncture. I still remember being on the phone with Mom when she had to run bec they were going to do an epidural with Julia and I could hear you, clearly displeased, in the background! :)

April 17, 2012 at 10:58 AM

Later:

10 years of motherhood (oh, and Julia's birthday)

When I had Julia, I didn't want her born on the 13th of the month....I was worried she would eventually have a birthday on Friday the 13th.  Well, since that happened, and her 10th birthday was on Friday the 13th, my views have changed.  This birthday was the best she's ever had.  It was awesome.

My gorgeous birthday girl - she got to dress up for school, and was the happiest little girl on campus that day!

Couldn't let the day go without getting a photo of us.  

Julia had 4 friends over for a sleepover, and it was epic.  They had such a good time!

We also had a party on Saturday with some friends.  This is the morning after the sleepover, and they are recovering, while watching the new Muppet movie.  Fresh waffles, good movies, etc.  All in all, a good morning!

I don't know where this gorgeous young lady came from, but I am so proud that she's mine. 

God, isn't she beautiful???

The past two days caught up with her, and she crashed Saturday night.  

Overall, it was an amazing weekend.  We had a wonderful time with family and friends, and we are so grateful  for the many memories.  

It's amazing to me to think that I've been a mom for ten years.  As a teenager, I didn't have a single desire to have children.  Now, I can't imagine what my life would be like without them.  They are my life, my pride and joy, my soul living outside of my body.  Knowing that my children are growing up to be such amazing people is such a fantastic privilege.  

They are my reason for fighting. 

Comments:

Ioana said...

Happy (belated) Birthday to Julia and many-many-many happy returns of this wonderful day to both of you.

April 18, 2012 at 12:05 PM

Later:

Chemo Round Two - First at CTCA

Well, yesterday started chemo round two, day one.  First round at CTCA.  I was anxious, but optimistic walking in there.  Still don't want to be there, but I feel like this is the best place to be.

We walked into infusion, and were sat in a small cubicle (videos of the infusion rooms here and here) for vital signs.  Not surprisingly, my bp was up a bit, but the anxiety accounted for that.  Once that was done, we got escorted over to my chemo cube.  It faced the Estrella Mountains and an airplane parking lot, which was so cool!  Paul (a volunteer - I think) was the one who escorted us to the cube, and he got me a bowl of fresh fruit, water, and warm blankets.  Love him!

OH!  My oncologist, Dr. Shiltde, came up to see me before chemo started.  What an awesome treat - I hardly ever saw my previous oncologist, so to see him that morning was really reassuring.

And - the funniest point of the day was when my chemo nurse brought me preventative mouthwash.  I almost fell out of my chair - of course, she didn't know of the debacle with Icky Nurse, so we had to explain it to her.  It was epic, and spoke volumes to the differences between the two facilities.

My nurse Carla was awesome, and walked us through the entire day.  She accessed my port (thankfully, they had given me Emla cream to put over the port an hour before chemo, which completely numbed the area and made the accessing totally pain-free!) and got me hooked up to my pre-meds.  Next came the chemo, and I was good through most of it.  Levi was able to make it to the hospital before he headed out to California for the week, which was awesome.  He hadn't been to the facility past the front lobby, so I think it was really great for him to be able to see where I am being treated, and by whom.  We had lunch together (courtesy of the executive chef...yum!), which was great.  Then, he headed out to the airport and I continued chemo.

My chemo was pretty good overall, until they started my 5FU push.  So, all of the other drugs are pushed via IV into my port, but the 5FU is the drug that is in my pump.  They start it with a push manually, then hook me up to the pump.  Apparently, I didn't react well, and I got really pale.  The nurse got me an Ativan, which made me loopy but more relaxed, and seemed to help my nausea that kicked up.  I think it's partially a physical reaction, and partially a subconscious reaction - knowing that this is the drug that likely causes me issues didn't help.

Getting home was okay - nausea kicked up some more, so I took a Compazine, which made me that much more tired.  But, it helped with the nausea eventually, so no complaints.

Oh - almost forgot - they ran a blood test thinking that the spots in my lungs were Valley Fever, which is something that most folks in this part of the country are exposed to once you've lived here long enough.  You can read more about Valley Fever here.  Unfortunately, I haven't been exposed to it, which means that the spots in my lungs are still up for debate on the origin.  Might be cancer.  Might be scar tissue from something else.  I'm banking on cancer, and pushing to make sure we do everything possible to stop it from growing.

Anyways, I woke up this morning with little nausea.  The Zofran seems to be keeping that at bay, thus far.  My energy level is pretty good this time around, and I'm grateful for that.  The pump I have is a bit bigger and heavier than I'm used to, but it's also quieter, which I like.  I'm feeling pretty "normal" today, which is great.  On a scale of 0-10 for nausea, I'm at about a 1, which I'm totally happy with.  Watermelon seems to be my new best friend, and is one of the only things that tastes delicious right now.

I'll try to keep this more updated as time goes on.  Please forgive me for not updating as much as I think people would like - more often than not, after a day at CTCA, the last thing I want to do is to recount my day here.  I will do my best to keep it updated, but please forgive me if it's not as timely as it could be.

I'm off to get my hair cut and colored (before it all falls out - the scalp tingling is a certain sign that I'll lose some of it).  More in a bit - here's hoping for a day with little chemo!