SEPTEMBER 28, 2012

Good News!

This post will likely be rambling, and I apologize.  But, you'll manage.  :)
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Well, as you hopefully have already seen, yesterday went well.  When the doctor came in the room at the med-on appointment, he was smiling.  And, I knew we were ok.

The long day started with the CT scan....which, I didn't realize, was a full-body scan.  For the past three weeks, I thought that the scan would just be the lungs, like it was back in June.  Because I thought this was lungs-only, I didn't understand that I had to cease eating/drinking an hour prior to the testing, or that I would have to drink the contrast.  Luckily, the contrast was not barium; it looked and tasted like water, which was nice!

And, while I was waiting for the contrast-drinking to start, the nurse that accessed my port screwed up.  I don't think she accesses ports regularly, so she wasn't familiar with the process, which didn't help my anxiety level at all.  Then, she couldn't get blood return from the port, so she had to do pull my labwork blood from my arm.  *sigh*  And, to top it all off, she didn't pull enough blood (she only drew two vials)....this was in spite of the fact that I asked her several times.  Every time we've gone in, they have pulled four vials of blood.  She only pulled two.

Anyways, the CT scan itself went without a hitch.  The contrast caused some nausea and other intestinal issues (which I'll spare you from detailing), but it was pretty easy other than that.

Leah, one of the awesome ladies on the PR staff, asked me if I would be interested in being in some pictures for the new collage (I think) in the expanded outpatient clinic waiting room.  (CTCA is expanding their outpatient clinic by, I believe, 22,000 SF!)  So, just before my massage, Leah and I headed into the radiation room and snapped some shots.  Here's a few....

The murals painted on the walls as you walk into the radiation rooms are stunning works of art.  

Floor to ceiling, wall to wall....just breathtaking.

I really like this one...the monkey makes me laugh.

The orange thing you see?  That's my port access.  

After my massage with the amazing Pat, Dad and I met Mom and Lisa for lunch, then headed to the med-onc appointment.  I was fairly nervous, but confident.  Until we walked back there.  Then, I wasn't so sure.

I think all of the preparation I did helped me be more calm, but the fact of the matter is, so much was riding on this test, and on the results.  We were waiting to find out if the last 6 months of chemo worked, if I would shift to oral chemo, and if I would be able to go back to work full-time when my short-term disability ends next month.

And, remember the nurse that only took two vials of blood?  Yeah - the med-onc appointment started out with the pod nurse (who works with my team) telling me that they had to pull more blood.  And, since my port wasn't giving any blood back, they had to poke my arm.  Again.  Damn it.

I told them they could only poke me again if they waited until we got the results from Dr. Granick about the CT scan; I wasn't willing to wait on the bloodwork.  So, Dr. Granick and team came in, and the smile on his face was enough.  I knew we were ok.  That didn't mean that I didn't ask a lot of questions, because I did.  But, the gist of it is this...

First, we didn't do a PET scan, so we don't know (for sure) if what we are seeing is cancer or not.  The reason we didn't do a PET is because chemo interferes with the results, and can throw false positives (which we definitely do not need).  So, this scan was a CT, and only showed us the size of the things we were looking for, as well as looking for anything new.

The lymph nodes in my upper left abdomen are back in normal range.  They have shrunk, and this is a good thing.  Again, there is no way to determine if there is still active cancer in those nodes, but we are happy about the fact that they have gotten smaller.

And, the tumors in my lungs are stable.  I was, honestly, hoping that they would be gone, but they aren't.  However, there is no way of telling if what we are seeing on the scan is active tumors or scar tissue left over from what we killed with chemo.  (I'm going with the latter....makes me feel better.)

Here's what the actual CT report says:
- Stable 1-2mm multiple bilateral pulmonary nodules suggest followup CT in 4 to 6 months to establish stability.  (Basically, this means that the tumors - which were 2-4mm at rediagnosis in March - are down to 1-2mm and have remained stable since the last CT scan in June.  We will rescan in 4-6 months to confirm stability, assuming CEA remains stable.)
- Nonspecific subcentimeter retroperitoneal lymph nodes.  (Translation, as best I can figure - the lymph nodes in my upper right abdomen are non-specific, meaning there's no way to see if there's cancer there, and are all under 1 cm in size.)
- No convincing evidence for hepatic, adrenal or osseous metastasis.  (There are no metastasis visible in the liver, kidneys or bones.)

And, I'm ok with all of this.

Based on these results, Dr. Granick decided to forego IV chemo yesterday (w00t!) and start me on Xeloda today.  I was very happy about this; no chemo and I get my weekend back?  Yes, please!

There were a lot of other questions asked, and answered.  The biggest one is, how do we determine remission.  Unfortunately, remission may not be possible in the traditional sense.  Because of the fact that my lung tumors are non-specific, there is no way to determine if I am NED (no evidence or disease).  And, NED is one of the goals to get to remission.

I was pretty bummed when I heard this.  But, the PA reminded me that, in some cases, remission is a state of mind.  Her mother has been on maintenance chemo for 7 years (I want to say she does chemo every few weeks or something like that), but is not NED....but, she considers herself in remission.  The PA, Kia, said that remission is what you make of it.

So, as of right now, assuming I handle the Xeloda well, I'll consider myself in remission.  If the CEA stays stable for a while, and I'm able to tolerate the oral chemo, I will be, in my opinion, in remission.

Oh, hell yeah!

So, for today, the gameplan is Xeloda for a while.  Right now, I'm on (2) 500mg pills twice a day, at breakfast and dinner.  I need to take them with food, to cut down on the nausea, and I need to watch my hands and feet.  One of the side effects that is most common is hand and foot syndrome, which usually consists of red, hot hands, and a burning sensation.  So, I'm keeping track of that.  Basically, I need to drink lots of water, and make sure I'm keeping my hands and feet well moisturized.  The reason the hand/foot syndrome is to prevalent is that they think the chemo is released by the body through the skin on the palms of the hands and the soles of the feet.  The preventative measures should help, including walking at least 30 minutes each day.  This is not a bad thing...

We will continue to monitor my CEA.  Dr. Granick will make a determination, based on CEA levels and how I tolerate the current dosage, on whether to maintain this dosage or to increase it. Here's hoping we can maintain for a while...

What else?  I think that's about it.  I know there was more, but it's almost bedtime.  Overall, yesterday was a good day.  We got some really great news....while it wasn't what I wanted, it was probably the best news we could have gotten.

What did I miss?  Do you guys have any questions?  OH - apparently, the news interview aired last night.  I didn't get to see it, as I was in bed already.  As soon as I have a link to the website, I will let you know.  And, I'm hoping that CTCA will burn me a copy....I promise to let y'all know.

Meantime, let's celebrate, my army!  We won this battle....the war is still being fought, but we'll take this.  Oh yes...we will take this!

Comments:

Tina said...

Overall it's great news, Michelle! Hope the Xeloda isn't too hard on you. If I remember right, that's the stuff that turns into 5FU in your body--or is somehow similar to it. It's still chemo, but shouldn't be as bad as the other stuff you've been taking! I'm sure you'll do fine on it, and you have a great team to help with any side effects.
Enjoy your weekend!!

September 29, 2012 at 7:34 AM

 Melanie said...

Yea yea yea and oh did I say YEA! Like I said a few months ago, unlike my aunt's re-diagnosis with breast cancer almost ten years ago, I don't have the same feelings with your situation. Her's was "how much time can she 'buy' with treatment". Your's.... "how long will it take to get things back to normal" :-) So excited with the news.... enjoy this wonderful weekend!

September 29, 2012 at 1:18 PM

 Carol Pack Urban said...

I was on Xeloda 3000mg dosage; three 500mg pills twice a day, if I remember correctly. Keep a notebook reminder for when you took your meds and log in what you've had to eat and drink and the times!!!!! You are awesome!

September 30, 2012 at 12:20 PM

SEPTEMBER 27, 2012

Stable and Normal

More later, but we got good news!  Tumors in lungs are stable, which is awesome!  Lymph nodes in abdomen are stable, and within normal range!  No infusion today; starting Xeloda tomorrow!  W00t!!!!!

Comments:

Akemiko said...

Doing my HAPPY dance all around the office!!!

September 27, 2012 at 5:06 PM

SEPTEMBER 26, 2012

And the countdown begins...

Well, the countdown to the big day begins.  Tomorrow is kind of a big deal: I have a CT scan in the morning (at the buttcrack of dawn - 7am), then results just after lunch.  *sigh*  Just thinking about it makes my tummy turn.  But, it will be just fine.

I'm pretty confident that things are going to be fine.  There is no reason for me to suspect otherwise.  My CEA has been steadily under 1.5, which is right where it needs to be.  I'm excited to be able to celebrate the success of this battle, and to ring the "end of chemo" bell tomorrow afternoon at CTCA.  And, I'm excited to move to the next step in this war, and to start the Xeloda.  (Ok - I'm not excited about a new chemo drug, let's be honest.  I'm excited about being done with IV chemo...)

So, today is fairly busy.  I've got to get laundry done, straighten up the house, get my meds list pulled together, make sure I have my list of questions for my docs tomorrow in order, get the kids packed for their overnight stays at Mom and Dad's, etc.  I try to keep the day before chemo for the day-before errands and to-do's, so that my mind isn't on what's about to happen.

Oh - I did get more information about the television interview I did last week; it's scheduled to air tomorrow night.  If you're in the Phoenix area, it will air on Channel 3 during their 9:00pm show.  (I knew it would air on the night I have chemo.....)  We are hoping that Channel 3 will add a link to the interview on their website, and CTCA has offered to burn me a DVD of the interview.  Once I come out of my chemo coma later this weekend, I'll see if I can post a link here.

Let's see - what else?  I think that's it for now.  I do have other things that I want to post about, but I'll do that later.  Will definitely post tomorrow.....meantime, I'm asking for all the good mojo you can send my way.....let's do this!

Later:

My thoughts, the night before....

As I sit here, on the couch winding down from the day, my mind inevitably goes to the events that will take place tomorrow.  How could it not?  I've been able to keep myself busy for most of the day, but when I finally have time to sit down, I start to wonder about the "what if's"....

What if things go well tomorrow?  Will I be able to tolerate the new chemo?  Will this new chemo keep things in check?

What if things don't go well?  What happens at that point?  Do we still have chemo available to use?

I can't control what's going to happen tomorrow.  As much as I want to, I've had to (begrudgingly) admit that whatever happens tomorrow is already done.  Worrying about things isn't going to help, or make a difference.  But, how I approach the testing, the results, and what happens due to results is something I can control.  Do I go in, worrying and wondering and terrified?  Do I go in blindly optimistic?

I'll likely go in terrified, but confident.  Worried, but hopeful.  Knowing that I'm in the best place I could be, surrounded by the most love anyone could ever ask for, and so grateful for the chance to share this amazing experience with you all.

I have had a lot on my mind lately.  A survivor friend lost one of her best friend's to this disease this past weekend.  I have another friend fighting for their life.  I keep meeting people that are battling something (don't we all have our own demons, be them cancer or something else?), and it makes you think.

Today is Kim's birthday.  She would have been 33 today.  Seeing her picture pop up on my facebook page always startles me.  Not in a bad way; just in a way that makes me think.

As this test tomorrow approaches and I'm thinking about my friends, it seems unfair, in a way, that I'm here.  Survivor guilt sucks.  I'm infinitely happy about surviving as long as I have.  I'm damn lucky to be here, and I get it.  I'm grateful to have learned to be grateful for what I have, and for who I am.  Many people don't learn to really love their life, and to understand that it's the small things that matter, until much later on in life.  I have a much greater appreciation for life now than I ever have; I see the tiny things that others may not notice as monumental.  Holding a door open for an elderly couple makes them smile.  Listening to my children giggle as they tug on the dog toy.  Watching my babies interact with their daddy, and feeling lucky that they are my family.  The beauty of the Arizona sky as the sun sets behind the White Tank Mountains.  The chirp of the birds as they celebrate the cooler temperatures here.

The big memories and the large events - yeah.  Everyone remembers those.  But, for me, it's the absolutely innocent beauty in the small pieces of life that strike me the most.

Anyways, survivor's guilt.  It's an awful range of emotions.  I'm so happy to be alive....I don't want to fight, but I know I have to.  And yet, as I continue to fight this battle publicly, and as I meet more people battling this disease, I end up losing some of them.  Some are friends.  Others are acquaintances.  Some, I've never met.  I feel each loss as a personal failure (even though I know it's not), and it spurs me to continue fighting.  I think of these amazing warriors when I'm out talking with people.  I use their stories to teach others.  I take lessons from each of them, and hope that I can honor their memories with the work I do to help others.

I wonder why I'm still here, and they aren't.  Each one of them, like all of us, had qualities that made them special.  They left behind children, spouses, parents, siblings, families and friends.  None of them deserved what happened to them.  There is no logical reason why they aren't here, but I am.  The guilt, when I start thinking this way, is overwhelming.

But, I know that I can't dwell on thoughts like that.  I can't explain why I'm still here, anymore than I can explain why they aren't.  I can't sit and wonder, anymore than I can stress out about what's coming tomorrow.  It won't help.  I need to acknowledge the feelings, give them credence, and let them go.

It's hard, though.  These thoughts can be kept at bay while I'm busy, but when things in life calm down and my brain starts sorting through everything, it's hard.  Like the proverbial pink elephant in the room that starts to trumpet to remind you he's there, these thoughts start to take over the conversation in my head and dominate everything.

People have their own ways of dealing with things like this; mine vary, depending on my mood and my energy level.  Some days, it's taking the time to meditate and open my mind; other days, it's listening to rock or metal and allowing my emotional release to take place through music.

Today was meditation.  Yesterday was music.  Being able to talk freely through this blog, and to put the thoughts into words, is always helpful.  I worry about putting things out here.  Will you all think I'm being negative?  Will someone take what I'm saying as how *they* should feel?  (Please don't - I'm not, in any way, a model for this disease....)  Will I concern folks?  What will my parents and brothers feel when they read this?

Know that I'm in a good place, emotionally.  Over the past 6 months, I've learned how to work through the bad parts of this journey to get to the good stuff.  In the words of Rodney Atkins, if you're going through hell,  keep on moving; you might get out.  And, I will.

Being back at work has been an eye-opening experience.  People stop by, and tell me how good I look (which is good for my ego....).  I think that people have an expectation that I'll look gaunt, tired, or "sick."  There is such a stereotype about what a cancer patient should look like.  Yes, I'm (almost) bald.  But, on my off weeks, I feel almost normal.  With the exception of being tired (and bald...), you wouldn't know I'm battling a potentially deadly disease.  I make dinner, do laundry, help the kids with homework, work, run errands, spend time with family and friends, build my business, and love my family.  I'm living.  Every single day, I'm living.

I'm not sure how to end this posting, and I'm not sure I knew where it was going when I started it.  It's rambling, and it's long, and it's scattered.  I should probably put a disclaimer at the top.  I don't know that I will.  I feel like these are the posts that will help another survivor the most.  It seems like so many of the blogs that I follow are almost saccharine; they are good, but it's rare that you see a post from someone where they talk about reality.  Life is messy enough.  Living life while you're battling cancer?  Yeah - that puts a whole new spin on things.  And, for those of us in the "AYA" catageory (adolescents and young adults), it's especially hard.  Raising kids while you're fighting cancer is awfully hard.  How do you explain to your kids about scans, bloodwork, CEA levels, chemotherapy.....no 10 or 6 year old should understand those terms.

But, they do.  I hope that they will be better adults because of it.  I hope that they are more compassionate with others, more forgiving, more loving.  I hope that my husband understands how fully I love him.  I hope that my parents know how indescribably important their support is, and how it has given me a better understanding of parental sacrifice and love.

I hope that my friends understand that their love has changed my life.  I have met people recently that I don't know...they have told me that they follow my blog.  That's a little disconcerting - I don't see myself as important enough to warrant that kind of attention.  But, their support is welcome, and necessary.  The unending mojo and prayers from everyone, all over the world, is completely humbling and totally overwhelming.

But, I've said it before.  If anyone has the support behind them to beat this thing, it's me.  I've got the best medical team a girl could ask for.  I've got the love of so many people coming at me every single day that I can feel it.  I've got access to the most recent information and the most up-to-date medical data.

I'm in a fantastic position to beat this thing.  Tomorrow, we'll know for sure if I'm on that path.  I'm off to bed, and to try to keep calm.

My army, you are amazing.  You inspire me daily.  I am so, so glad you're mine.  Let's do this.  Keep on moving, people.  Keep on moving....

Comments:

 I'm Nic. said...

Not rambling at all...and I was listening the whole time. I just wanted you to know that....

September 27, 2012 at 3:42 AM

 jamie said...

this is so powerful . . . sending all the positive vibes i've got in my arsenal.

September 27, 2012 at 8:32 AM

SEPTEMBER 18, 2012

CTCA

Well, today should be interesting.  I have an interview with a local news station (Channel 3, for local peeps) at CTCA about using alternative therapies (specifically, in this interview, acupuncture) to work with traditional cancer treatment (chemo, radiation, surgery) and to help mitigate the side effects, improve your quality of life, etc.  I'm pretty excited, and suddenly extremely nervous about it.  I haven't done this in a while, and never while I was bald and after I gained weight.  But, it's something I feel extremely strong about, and I'm proud that CTCA considers me a good representation of their patients.  I hope I can do the facility and the other patients justice...

On that note, I've had several people ask me about what CTCA has to offer, and what I'm using, in addition to the traditional chemotherapy.  Gosh - there is just so much available to patients and caregivers there that I know I won't be able to adequately talk about it.  In all honesty, your best bet is to take a tour.  If you have a facility near you, please consider going in and asking for a tour.  I guarantee you, you won't regret it.

So, what makes CTCA such an amazing place for me?  Well, first, it's the atmosphere.  From the minute you drive up to the facility, there's a sense of something more; it's not just a hospital.  When I drive up, I take my car to the front, and Eric parks it for me.  This is a perk for patients and caregivers, and they will not allow you to pay for this, or to tip the valets.  I know this seems lazy, but when you are tired, or sensitive to the sun (and live in Arizona), this is an awesome feature.

Walking in, there's always someone there to greet you.  They ask how you are, and are genuinely concerned.  They help get you to where you need to be, if you need it.  Walking down the hall, you'll pass the beautiful, relaxing fish tanks that my kids adore.  You might pass one of the many service dogs, who are there to boost patients' spirits.  I can tell you, seeing those dogs, hugging them, loving up on them, seeing their sheer joy at interacting with the patients - yeah, that definitely boosts your spirits.

Down the hall, you'll inevitably run into someone who says hi, whether it's a stakeholder (someone who works at CTCA), another patient, one of your docs or nurses, or a volunteer.  You will probably get sidetracked and, if you aren't careful, you'll be late to your appointment.  Not that I've had this happen.

Sometimes, I'll stop in at the Starbucks for a boost of caffeine, or a freshly-made fruit or veggie smoothie.  These are made with mostly local produce (they are currently using about 70% local produce), and the produce is all organic.  If you want a fruity, sweet smoothy, Doe and team will hook you up.  Want something to settle your tummy?  They have that too.  Need protein?  Ok.  You name it, they have it.

Hungry?  I often eat at CTCA, for a few reasons.  A, it's delicious.  Their Executive Chef team creates delicious, healthy meals that are easy on the budget (I can feed the kids and I a full lunch for under $5.  Total.)   They have everything from gourmet entrees (think salmon, fish, chicken, steak, etc.), a salad bar, a grill (burgers, sandwiches, etc.), snacks, desserts....just about anything you want.  And, it's not typical hospital food.  It's delicious.  Not pre-packaged, not pre-frozen ickiness.  Fresh, delicious, inexpensive.

Going into the outpatient clinic, the ladies at the front desk will give you a warm smile, a hug, and help you with whatever you need, even if it's just offering an ear.  You'll likely run into one of the patient navigators there; Jessica is mine, and I adore her.  She helps me with questions I have, getting answers I need, etc.  She's there to do the dirty work I shouldn't have to do while I'm fighting cancer.  Such a relief....

So, onto the things you're all much more interested in, I'm sure.  There is, of course, the salon on-site.  They do hair (haircuts and shaving, if needed....), wig fittings, manicures, pedicures, prosthetic fittings, etc.  These ladies are so sweet and kind.  I love going in there.  One of the nicest things is that, if you are an in-patient or in treatment (say in infusion), the ladies will come to you for your salon treatment.  Yes, they bring the pedicure to you while you're in chemo.  Freaking awesome.

The rehab area is, honestly, where I spend a lot of my time.  The facility has physical therapists and occupational therapists on-site to help patients with a variety of things that I'm sure I can't even fathom at this point.  Lymphadema, muscle strength, flexibility, mitigating pain, working with laser therapy to help with dry mouth, muscle pain, etc.  It's amazing what they can help with.  I worked with Jennifer in the past doing myofascial release, which helped my back pain enormously.

I am currently using the services of three or four of the other alternative therapies on a monthly basis.  I work with Sue, who is the CTCA speech therapist.  She helps folks with swallowing issues (due to radiation, chemo or surgery side effects, etc.), speech in general, and she and I work to help me with my chemo brain issues.  Chemo brain is a very real issue that can happen as a result of chemotherapy, and is thought to be a result of how the chemotherapy effects the brain and it's function.  Chemo brain can last a few years, or for forever.  *sigh*  Anyways, Sue helps me with ways to organize my thoughts, exercises to help my brain with chronological thinking, planning and organizing, and memory (short- and long-term).  In all honesty, this has helped me so much that I can't even begin to put words to it.  I know that, if I wasn't working with Sue, I wouldn't have been able to go back to work in any capacity.  I wouldn't be doing everything that I'm currently doing on off-chemo weeks, and I know that I wouldn't be mentally as alert and upbeat as I am.  If you are dealing with chemo brain, please talk with your medical team about working with someone to help with this.  It's a very real side effect, and one that doesn't have to be just accepted without treatment.

I also use the CTCA chiropractor.  I adore Dr. McDonald.  I've had some folks ask me what my spine has to do with my cancer and the treatment.  If you think about it, your cancer isn't just affecting the cells that have turned; it's affecting your entire body.  The chemo and radiation aren't isolated to your cancer; it's affecting your entire body.  In my opinion, when your in treatment for something like cancer, you can't look at it as an isolated situation.  You need to take care of your entire body.  If your body has stress or injury or pain in another area, it's not able to concentrate it's energies on fighting the cancer and healing the body after treatment.  In addition to that, Dr. McDonald has things he does to help with nausea, fatigue, etc.  The body is such an intricate machine, and it's all so intertwined, that it's hard (for me) to not consider taking care of it in it's entirety.

I depend on Pat's massages.  Prior to working with her, I thought (like most people, I believe) massage was used solely for relaxing me when I was stressed out, or for getting the knots in my back out.  Holy cow - it's so much more than that.  Pat and the entire rehab team work together to talk about what I'm dealing with, issues they are seeing, etc., and then work to get my body back in order and my energy centered and focused.  Pat (who I also adore) uses her tuning forks on various marma points on the body to help relax muscles, relax the skin, and has (in a shock to both of us) been able to use this process to calm my skin rash from the Erbitux.  We know it's working, as we see immediate results (less redness and swelling, and less breakouts later).  We also know it's working because I missed a weekly session with her, and my face broke out something awful.

And, Dorion, who is the doctor that does acupuncture, has been essential to helping me get my nausea under control.  He has also helped with my neuropathy, which kicked back up when I started Folfiri in March.  Apparently, the 5-FU was causing me some issues, and he was able to use acupuncture to help me retain and increase sensation and feeling in my hands and feet.  I'm excited to use this more, and to learn more about how these therapies work together in the body.

In all honesty, when I started at CTCA, I didn't expect to use any of the "alternative therapies" to help with the traditional chemo.  I've had to force myself to have an open mind, and to try as much as I can.  If they have an entire wing of their facility dedicated to these things, they work.  One of the things with CTCA is that they don't promote anything in their facility that they don't have scientific proof to back up.  And, they will not ask you to consider something that they don't honestly believe will help you.  It took me a while to open my mind enough to really allow my body to utilize these things, but now that I have?  I'm so so so glad I did.

Instead of worrying about just my cancer and getting rid of it, I'm using what I have at my disposal to help my body fight and heal.  I'm looking at this as a life-long battle, and if that's the case, I need to give my body the tools it needs to fight this damn cancer off.  If I use some therapies that aren't considered mainstream, I'm going to speak about it.  CTCA has a higher survival rate than the national average, and there's a reason.  I don't know what that reason (or reasons) is/are, but I'm going to try everything I can to be one of their many, many success stories.

SEPTEMBER 13, 2012

Mid-Week Update

Well, in spite of my upbeat post over the weekend, I spent the vast majority (95%, probably) of Saturday and Sunday sleeping.  I have never, ever been that weak or drained.  It went so much beyond "tired" or "exhausted"....I literally couldn't keep myself awake.  I decided to listen to my body and give it what it needed; thank goodness I did, because by Tuesday, I was up and about and feeling *tons* better.  Not 100%, but better.

As of today, I'm feeling really good.  Much better - hard to believe it was just a week ago that I went through all of that.  I'm tired (normal), but feeling really good. Mentally, I'm ready to tackle all that I have to do, and I'm confident about my CT scan at the end of the month.  I'm ready for my final IV chemo on the 27th, and I'm ready and willing and able to STOKED to get back to living.  A good, long stretch of normal and boring would be VERY welcome.

Dad spoke with my care team about last week's debacle.  After reviewing the notes and data, they are fairly certain that I reacted to the Irinotecan, which I've been on since March (I lost count of how many rounds....we'll just say I've been on it for 6 months).  So, the next round on Sept 27th will look like this...

7am - arrive at CTCA.  Port access, lab draws, and CT prep
8am-ish - CT scan
10am - Massage with Pat, genius with tuning forks
12:30 - med/onc appointment (this is where we will discuss the reaction, get results, etc....very exciting!)
2:30 - infusion, with just pre-meds and Erbitux

Now, assuming I'm awake at the end of this round of chemo, and when we get the good news from the CT Scan (because it will be good), I will ring the bell in infusion.  What's this bell, you might ask?  Well, in both infusion and in the radiation department, CTCA has set up a beautiful brass bell.  When you complete your last treatment, you get to ring the bell in celebration.  Oh, hells yes - I'll be ringing that damn bell.

So, lots to look forward to.  I've started my visualization board for remission - Walt Disney World and Nashville pictures have been printed.  Need to work on others, but my computer and my printer don't want to work together right now.....stupid technology.  :)

Oh - some of you have asked how I did on the Marinol this time....well, I remember everything, so I consider that a HUGE plus.  I will say that, while I did have some nausea, I was able to keep it under control with regular Marinol (at half-dose) three times a day until Tuesday.  I finished the Zofran on Monday, so that's a pretty good improvement.  Yesterday, I only had to take it the Marinol in the morning, and haven't had to take anything since then.  Admittedly, I do see a decrease in my appetite when I'm not taking the Marinol, but that's ok.  I'm eating healthy and making smart(ish) choices.

Oh - fun recurring side effect this time?  Mouth sores.  I could really do without those, to be honest.  I'm not sure if they are a result of the chemo (and increased sensitivity) or a reaction to all the anti-reaction meds they gave me.  Will ask when I go in; for now, I've learned to work around them.  They aren't awful, but they still aren't fun.  Makes planning dinners very boring...

Overall, I feel like I reacted and recovered as well as could be expected to what went down last week.  Listening to my body and giving it time to recover and heal made, in my opinion, all the difference.  I've found that the meditation has helped me, and I will absolutely recommend it to anyone.

I had a conversation with my brother in Sweden today, and I told him that I feel like I'm reacting to the chemo this time better than I did four years ago at this same stage (ending IV chemo).  He pointed out that I'm on different drugs, which is fair.  But, I just feel like emotionally, I'm in a much better state, and that helps me handle what my body is going through better.  Odd, isn't it, being that back then, I was stage 3 and curable.  Now, I'm stage 4, and cure isn't something folks like to talk about with colon cancer at this stage.  But, I'm more at peace with what's happening, and I really do feel like that's enabling my body to, well, heal.

We really are amazing creatures, aren't we?  Think about what happens in your body daily, and how it heals itself.  Pretty cool.  Please don't take your body for granted; you never know what's going on inside, for sure, but taking care of that machine we've been given and making sure that you give it what it needs will allow you the peace to know that you've done what you can to keep it running well, for a long time.

On that unintended soapbox comment, I'll step down and sign off.  More soon; got an exciting phone call today that, if it pans out, could be really cool.  Will let you know.

Comments:

Carol Pack Urban said...

Wonderful post!!

September 13, 2012 at 11:19 AM

 Amanda: said...

mouth sores were the worst for Josh, too..... glad to hear you're hanging in there.

September 13, 2012 at 7:30 PM

 Lisa said...

I got my first mouth sores this round too. They aren't fun. I think it was because I hadn't had them before and sort of slacked off on the salt rinses.

I am glad you are doing well. When is your next CAT scan? I think mine will be the second week in October.

September 15, 2012 at 7:50 PM

SEPTEMBER 8, 2012

Chemo Update, and Allergic Reaction

Well, this last round of chemo turned out to be much more interesting than we wanted it to be.  I will say that, mentally, I went into this round in a much better mental state than I have in the past.  A few things have contributed to that.

My friend Scott came into town this week, and having him here was a really good distraction.  He and I met at the LiveSTRONG Young Adult Cancer Survivor I went to a couple of years ago.  He came in from Toronto by way of Pittsburgh, and it was nice to have him here for a few days!  

In addition to that, I have been spending much more time this past few weeks meditating and trying to keep myself in a better mental state.  So far, it's been extremely helpful.  Over the past couple of weeks, I've been working with my speech therapist at CTCA to teach me how to meditate, and to be able to calm myself quickly and easily.  Sue (my speech therapist) is an amazing asset to CTCA; her services go far beyond just speech.  She does help people with that, but it extends into helping with pain, chemo brain (my biggest issue), meditation, etc.  I absolutely love Sue.  I am so glad that I've been able to keep seeing her; she's been absolutely essential in helping me deal with all of this.  

So, as I said, I approached this round of chemo in a much better mental state.  Knowing that there were only two more rounds left helped, to be sure.  I started Thursday with a pumpkin iced coffee from Dunkin Donuts (yum!!!), and a quick ride to CTCA with Dad and Scott.  When we got there, I had massage therapy with Pat (she uses tuning forks to work with various points in my body to release muscle tension and to bring the energy in my body back into synch).  After that, I went into speech therapy with Sue, and we talked and did a quick meditation.  

From there, we all headed to my med-onc appointment.  Good news is that my CEA is still stable (1.2 this week - and, remember that anything under 3.0 is normal, so we are still very good....).  We talked about the concerns I had about amnesia the past two rounds, and we switched up my meds.  I asked about medical marijuana (specifically edibles), and we added a drug called Marinol to my regiment, which is basically a synthetic version of THC.  So far so good, and it seems to be working.  It's helping with my nausea and it's helping with my appetite, and I have no complaints.  And, taking a few of the other drugs out has allowed me to stay conscious and aware of what's going on, rather than losing days at a time immediately following a round of chemo.  

We finished up with our med-one appointment, talked with the naturipathic oncologist (no real change on any of those scripts), then had a conversation with my nutritionist.  I had some concerns about some issues I was having and making sure that I'm getting enough of what I need, from a nutrition standpoint.  We talked a bit about shifting up what I'm eating and when, and I'll be making some small changes to help with some of the issues I'm having with diarrhea.  On that note, I had to laugh - Barbara, my nutritionist, recommended pineapple and marshmallows to help bind things up.  I immediately had a picture in my mind of two slices of pineapple, with marshmallows in between.  My mind then took it a little farther and added chocolate sauce.  Yeah - I went there.  When I asked her if I was supposed to eat them together, she laughed and I learned that she didn't mean for them to be eaten together.  Bummer.  :)  

After a quick lunch in the cafeteria and a short stop in pharmacy to drop off my new meds request, I headed up to infusion.  My good friend Lisa was there with us through all appointments, and she joined us in infusion for a while, too.  Scott was there, and Mom and Dad were, of course, there.  I had to laugh because there are days when I'm there that I feel like I come with an entourage.  Hey - why not!  Having people there is a great distraction.  

This is where the interesting part of this round of chemo started.  I was just about finished with everything, and my nurse, Carmen, had taken my last set of vitals before discharging me.  I started to feel nauseous, and had been having some twitches in my eyes as well as my back and legs.  When I mentioned it to Dad, we decided to tell Carmen, to be on the safe side.  She came over, and my nausea had (by then) gotten worse.  She asked if I wanted meds, and I immediately said yes.  I needed to have something, right away.  At one point, I told her that in the past four and a half years, I haven't thrown up from chemo, and I'll be damned if I'm going to start now.  Carmen called the doc on call, and we talked about options.  Finally, they decided to give me IV Zofran, which did help.  Unfortunately, within the few minutes it took to get the meds, I went from ok to HOLY CRAP!  My nausea kicked up big time, I went really, really pale (according to my dad), and my vitals went out of control.  My bp (normally in the low 100s over the love 60s) was up to 185/110.  My oxygen was under 90., and my pulse was racing.  In addition to that, my chest got red and rashy.  Basically, I had an allergic reaction to the chemo....the twitching and the nausea were some of the first symptoms of the oncoming reaction.  

This whole process lasted for a few hours; the nurses reacted quickly, and after they gave me three meds to help offset the reaction, I finally started to recover.  In talking about it with my Dad, the reaction by the infusion team was amazing; once Carmen realized that there was an issue, she called for help and the team assembled.  The other nurses took over care of Carmen's other patients, so she could focus completely on me.  They brought the crash kit over (and yes, we had to use some of the items in there), and at one point, there was 6 nurses helping me.  I know I wouldn't have gotten the same treatment if I had been at the old oncologist.  They just wouldn't have been able to handle something like that.  

I will say that having the reaction sucked.  I had leaned forward when I started feeling nauseous, and then froze in that position when everything started to go downhill.  I was in that position for probably a couple of hours.  At one point, I wasn't able to even talk; I had to communicate solely through hand gestures.  Movement of any kind was overwhelming, and exhausting.  When I finally started to feel better, I was able to lean back and relax.  

Even with all of the steroids they gave me, I was the weakest I ever remember being.  It wasn't tired, just physically weak.  I've been sleeping a lot the past two days, and haven't moved much beyond our bed and the couch.  I'm hoping to get up and get a shower today...that would be nice.  

So, we'll see what happens when I go back in in three weeks.  The plan right now is to do a CT scan on the 26th of September, then we'll meet with my docs a few hours later to get results.  Hopefully, we will see significant shrinkage of the tumors, and be able to move to the oral chemo, Xeloda.  

Today, I will be resting more.  I'm still pretty tired, so I won't be overdoing it.  I'm looking forward to feeling better this weekend (which I know will happen), and to getting past this reaction I had.  Lisa is going to stop over today to help with cleaning the house, getting laundry done, etc.  Levi is here with the kids, and they are making me smile.  Mom and Dad have been absolutely wonderful in helping me make sure that I get the right meds when I need them, and just checking in on me.  

Now, onto recovery and the next step....

Comments:

Carol Pack Urban said...

Oh gosh, I remember how panicky I felt when I had reactions to chemo like that! Remember not being able to breathe with Oxaliplatin and then that same reaction you had this time although I wasn't stuck in one position I got restless legs syndrome from the Benadryl so they gave me Solucortisol(sp?). I pray to God this is the last time you experience a horrible time with chemo and that you are DONE, DONE, DONE sooooooon!!! P.S. I was on the clinical trial for Xeloda pills (3000mg twice a day). You must make sure that you remember to drink enough and to eat.

September 9, 2012 at 6:34 AM

 Caroline said...

Wow! What an experience. I had an allergic reaction to the Benadryl (of all things) in my first round of chemo. That was no fun but not as bad as you. Big hugs to you.

September 11, 2012 at 3:49 PM

 Lisa said...

That sounds horrible. I love following your blog. I was also diagnosed with stage 4 (colon cancer) in March. What a ride.

September 11, 2012 at 4:33 PM

 Juanignacio Porras said...

Hola, Hi !!

I am a colon cancer stage IV patient 49 years old, from Spain. I have been figthing since October 2010. I have suffered several and major surgeries, serious complications and I have been on the brink of death.
I had a recurrence in March in my residual liver.
Again new surgery and new chemotherapy.
At this time, I have known blogger of people suffering from this cancer, from Spain and worlwide. I admit I am hooked on them.

When I wrote this words I did not know the new terrible issue.
Yes, I HAVE AN OTHER RECURRENCE, on the same site and same lesion (?). And besides the chemo did not work at all, it's terrific.
If it is possible, I will have my 7th surgery. It is all incredible!! But I have to fight for my little son, my wife, my mother and family and for me too.
 I was to receive my 4th round of chemo but I did not.
Yesterday I had a PET-CT and it seems there no be others metastases for the time being.

September 9, 2012
I had my 7th surgery on the 17th of August. This time they did a Radiofrequency Ablation because my liver is very hurt. The postsurgery time was awful
Now I am feeling pretty good
I am waiting a new CT and I will find out whether surgery  has worked  or not.
Fear is  always with me

I wish you the best and I hope to read your blog for many years.
Good luck and best regards

Juan Ignacio

September 12, 2012 at 5:33 AM