JANUARY 28, 2014

More good CEA news....

Well, last week's appointment went well!  My CEA is down to 7.1 (woot!), and my platelets were up to 67.  While my doctor wasn't as impressed as I was with my platelets numbers, he did agree that a 15 point jump in platelets was worthy of a smile.  :)

So, I was able to do chemo on Friday, just Erbitux this time.  We decided to hold off the Xeloda for another two weeks.  Assuming all goes well, I will have another round of doctor's appointments, etc. next Friday, and start on a one week on/one week off regimen for chemo.  Erbitux on a Friday, start the Xeloda that day.  Xeloda for 7 days, then off for 7 days, then start the cycle again the following Friday.

My dr is thinking that my body is still recovering from my epic hospital stay, and that's what causing the numbers to keep plummeting.  We know that my bone marrow is working a) because of the bone marrow biopsy, and b) because when I have the Neulasta shot, my numbers recover.  So, it's just a matter of giving my platelets time to recover enough to warrant giving me chemo.

I was definitely excited about my CEA count, although Dr.K. is always, always conscious of reminding me that he doesn't treat a number.  I told him that I understood that, but that it helps me to see that number going down.  We agreed that it's likely the Erbitux causing the number to decrease, and we talked about how the Erbitux works.  It's not a traditional chemotherapy, in that it doesn't target and kill cancer cells.  Instead, it works to stop the cancer cells from growing by inhibiting a growth factor on the cancer cells.  So, the lowering CEA indicates that there is likely slowed growth of the cancer.

We talked a bit about how we are going to continue treatment, when CT scans are appropriate, etc.  We are going to look at doing a CT at the end of February, as this will give us a good visual of what's going on (and give my dr another data point to make decisions with).  Right now, we are hoping for stabilization of growth.  That would be the goal.  So, here's hoping.

I asked him about going back to work, and specifically, what goals he needs to see me achieve before he'll allow me to return to work.  Surprisingly, he said I can go back whenever I want to.  While I'm not ready quite yet, I am going to start making some inquiries about opportunities, etc. this week, so I know what my options are.  I'm excited about it, but I'm also scared out of my mind.  Going back to work seems like such a normal thing to do, such a wonderfully normal thing, and I feel like I'm tempting fate by even thinking about it.  So, I'll start asking around and make a slow, informed decision.

What else?  Oh - Kevin broke his arm this weekend in a fabulous bike crash.  I have to take him tomorrow to get his hard cast on.  He'll be fine, but as he broke his right arm, and he's right handed - well, I'll be helping him with his homework for a while.

I have some other ideas rolling around in my head for blog posts, but they are going to have to wait.  I have a ton to get done today....so, on that note, have a fabulous Tuesday, my friends!

Comments:

Carol Pack Urban said...

AWESOME NEWS! FREAKING AWESOME!!!!!!!!!

January 28, 2014 at 2:31 PM

 Joan Bardee said...

this post gave me a really big smile. Yahoo

January 28, 2014 at 6:03 PM

 Nancy Abrams said...

I love hearing the up beat girl back..just your words show your inside feelings..good news about you...tell Kevin to take it easy on yall..lol..

January 30, 2014 at 10:09 AM

JANUARY 22, 2014

Chemo on (termporary) hold

Well, Friday's appointment wasn't nearly as long as I had planned.

*Note to self - I need to update this much sooner than 5 days later....slacker...*

I had gone in on Thursday for lab work, and completely forgot to check my blood levels, specifically my whites, reds and platelets, online.  So, walking in to the appointment on Friday, I was slightly blind, which is fine.  I mean, seriously - how many other people have the amazing luxury of being able to view their lab results a) within the hour, and b) online.

Anyways (apparently, this is going to be one of the winding, this-isn't-going-to-make-sense blog posts....sorry), I went into my appointment on Friday, only to find out that, while my reds, whites and ANC (absolute neutrophil count) were well within normal-for-me range, my platelets were not.  Last week, they were at 60.  On Friday, they were down to 52.

I was not happy.

The decision was made to hold my Erbitux off for a week, hopefully giving my bone marrow time to recoup my platelet count.  I could have had chemo, as the generally understood cutoff is 50.  But, while Erbitux doesn't reduce your platelet count significantly, any drop would mean that I couldn't have chemo *this* week, and as the plan was to restart the Xeloda along with the Erbitux this Friday, that isn't good.

I asked why my number keeps dropping.  I asked a lot of questions. Basically, what I learned is that we know that my bone marrow is working.  It rebounded my whites, ANC and reds as a result of the Neupogen shot I had two weeks ago, so it's definitely working.

Michelle's version of Bone Marrow 101:  I asked how the bone marrow creates the cells, and why my platelets are having such a rough time recovering.  I found out that your bone marrow makes general cells, and that there are mechanisms that, as the cells mature, trigger those general cells to become red blood cells, white blood cells, platelets, etc.  We know that the bone marrow itself is working - the bone marrow biopsy from late last year confirmed that.  So, it appears that the mechanism that turns general marrow cells into platelets isn't quite working the way it needs to.

I asked why this is happening.  It appears that this is still a result of the Temodar I was on.  My numbers had started to recover, and then we hit my body with new chemo.  This is not unexpected, and I am not in any danger like I was last year, when I landed myself in the hospital for 22 days.

The good news is that I feel fine.  I'm not bruising or bleeding or anything that would lead us to believe this is a huge issue.  I feel great.  I'm doing all of the work around the house that I would normally do (making meals, cleaning up the house, laundry, etc.), and while my back is kicking up a little bit (to be expected, as I'm doing more than I have in a long time), I feel really good.  My energy level is up, and I'm not having to take meds to keep me awake during the day anymore.

All in all, it wasn't a bad appointment.  I got a free day, so Levi and I spent it together, running errands and just enjoying the time.  We'll see what happens this week.  I get blood drawn tomorrow, so I'll look and let you know how things play out.  If all goes well, I'll go back on Xeloda and Erbitux on Friday, which will be a very good thing.

Comments:

Joan Bardee said...

well, the bone marrow lesson was interesting. my major take away is that you are feeling well. yahoo!

January 22, 2014 at 5:20 PM

JANUARY 14, 2014

Slight change of plan....

Because I'm getting an infusion of Erbitux weekly, I'm meeting with someone from my care team (either my PA or my doc) every week.  It's nice to keep in such close contact with them, so they know what I'm feeling/doing, and so that I know what they are thinking.  We also check my blood levels each week, things like a CBC (a complete blood check) or a CMP (complete metabolic panel, I think), to make sure that my blood levels are stable.

Not surprisingly, they aren't.  Given what I've been through and the fact that I'm still (honestly) in recovery from my 3-week vacation in the hospital, this is not unexpected.  Matter of fact, this is part of the reason they are keeping such a close eye on me.

Last week, I had some blood drawn, and got the results on Friday (because, quite frankly, I forgot to look at them).  I had the labs taken on Thursday and hung around CTCA, as we all anticipated that I would need to get an injection of Neulasta, which is a quick-acting drug that boosts your bone marrow into overdrive, making more red and white blood cells.  As my numbers weren't dangerous, I was able to go home and just come back the next day (which would have been last Friday) to talk about things and to have my next chemo.

As expected, my platelets, reds, whites, and absolute neutrophils are all on the low side.  (If you're feeling particularly scholarly and want to learn more about those things, there is a fairly good article here which explains what normal is for those counts, and why they are all important.)  The good news is that the numbers aren't low enough to freak out, but they are going down and it's worth keeping a very close eye on.  Because of my platelet count (currently at 60), the doctor has decided to take me off of the Xeloda (the oral chemo) for a few weeks.  One of the known side effects of this chemo is that it will lower your platelets and other counts, and we don't need my numbers plummeting to 2 again.  I'm staying on the Erbitux weekly for now, at least until I see the team back again on January 24th.

On Saturday, he also sent me in for a Neulasta shot, which again helps boost the bone marrow production of white blood cells.  I've had Neupogen before, which causes an immediate boost in the marrow production.  I don't like that one because the side effect is some pretty severe bone pain.  The Neulasta does the same thing but on a slightly longer time line (I guess) so the pain isn't quite so bad.  I've started noticing some achiness in my joints, which makes me think (now that I'm putting two and two together) that the shot is starting to work.  So - yeah!

I'll go back in for labs on Thursday of this week, with another dose of Erbitux on Friday.  I feel like I'm handling it pretty well - I usually fall asleep during the infusion because of the Benadryl they give me, but once I come out of that, I feel fine.  Matter of fact, I was able to help Levi with some errands this past Friday and felt good enough to join the family for dinner.  :)

Speaking of Erbitux, I've noticed my rash seems to be fairly well under control.  Between the antibiotic they have me on (Doxycycline twice a day....I can't remember the exact dosage), a hydrocortisone cream for my face that I use morning and night, calendula cream for my face and dry skin, and other stuff, I feel like I'm managing it pretty well.  I still don't like the rash, but it's a lot easier to handle when you have some tools to help with it.

Speaking of that - ladies, I have found a great make-up regimen to help me feel pretty during the day.  I went to my local MAC make-up store and worked with a wonderful lady there who helped me before.  I explained the situation, and we took a look at some new "tools".  Basically, I'm using all of my moisturizers (4 in all), then a tinted make-up primer, concealer as a foundation, and a foundation powder.  I'll tell you what - it works like a charm.  So, if you're going through Erbitux and need a little pick-me-up....ladies, I highly recommend this.   :)

I think the only other rash-related thing I can complain about is my scalp - there is definitely rash there, and it itches.  Drives me up a wall sometimes.  I'm currently trying a tea tree oil shampoo and conditioner, but I don't think it's doing as much as I'd like.  If you've got any suggestions, I'm listening.

What else?  I'm still adjusting to this new body.  I started physical therapy this week, and I'm excited about it.  I think it's going to help.  They are giving me some pretty good tips on stretching, etc.  I go back again tomorrow - we'll see how things work out.  I have some pretty lofty goals (running again, get back to work....), so we definitely have our work cut out for us.

I think that's about it.  I have a bunch of work to do.  I'm applying for the Colondar - again.  Hoping my health remains good so I can take part.  We'll see!

More later.  I see the docs again this Friday - I'll try to update you over the weekend.  Meantime....peace out, my peeps!  LOL!

Comments:

Carol Pack Urban said...

Overall, I think this sounds very good!

Does your scalp itch enough to make you want to pull your hair out? I wonder if a leave in moisturizer would help?

January 15, 2014 at 12:08 PM

JANUARY 8, 2014

Happy New Year's!!!

So, apparently, I suck at this "updating the blog" thing....I really thought I had updated more recently than Dec 23rd.  My apologies.

Anywhoo....Happy New Year!  We had a wonderfully calm holiday season....thankfully!  Levi had a week off, so spending the time together as a family was just amazing.  We haven't been able to do that (while I was feeling good) in a long time.

As I said, the good news is that I am feeling better than I have felt in many moons.  I am walking completely upright, and mostly without the walker.  (Knocking on wood as I type this....yes, I'm serious.)  I am mostly pain-free (thanks to the pain meds), and my mental state is better than it's been in a while.

Christmas was, as I had hoped, epic.  The kids were spoiled, thanks to the help of many, many Santa's.  If you sent the kids something and I haven't personally thanked you, please know that I am working on thank you notes, and they will be going out this week.  Levi had spent many weeks making me a bed...yes, a bed.  As in, he took wood and hardware from home improvement stores and made us a bed frame.  He didn't think it would be done until January or February, but we ended up setting the bed in our room on Christmas morning.  It's just gorgeous....I don't have pictures on me (they are on my facebook page, though), but suffice it to say it's made of poplar and black hardware, giving it a very contemporary, rustic look.  He also had to make me a step stool - the bed sits very high (I'm 5'4", and the top of the mattress hits just above my belly button), and I was having issues getting into the bed.  He's also working on plans to make us matching bed stands, and is working out the logistics for making us each a dresser.

You'd think the man didn't have to work, but all of this is being done on top of working full-time (this month, he's travelling to California each week!).  He's a keeper.

He and I celebrated out 12th wedding anniversary on the 29th; we took the kids to a local zoo and spent the day just enjoying the gorgeous weather (it was in the 70's) and each other.  Believe it or not, I was able to walk through the entire zoo, using my walker mostly as a carrier for my purse and only sitting for a few brief moments.  When we got to the end of the day and it hit me what I had just done.....I was so damn proud!  2 months ago, I couldn't walk around the inpatient unit of the hospital, and today, I walked around the zoo!

It's like a Christmas miracle.

Chemo seems to be working well.  I'm now into cycle two of the Erbitux/Xeloda regimen.  I'm tolerating the Xeloda fairly well, although in the past day or two, I'm seeing some slight cracking on the tips of a few fingers.  Needless to say, that's not unexpected given the dry conditions in Arizona this time of year.  Combine that with the potential for hand/foot syndrome from Xeloda...let's just say my hands have been drenched in various lotions the past few days, and I'm heading to the store to get more thick, butter-style lotions today.  Last night, I actually slathered my hands in lotion and slept with moisturizing socks over my hands.  They didn't stay on all night, but anything helps, right?  :)

As far as the Erbitux goes, the rash is still there.  Dr. K put me on a hydrocortisone cream to help combat the redness and swelling, and it's actually helping.  Between that (which has a moisturizing quality to it) and the 3 other moisturizers I'm using, I seem to be able to combat the dryness pretty well.  Last time, the rash was pretty much isolated to my face.  This time, I do have some on my face (especially around my nose/mouth area), but the rash and dryness is also on my shoulders and upper torso.  The dryness is particularly bothersome - I'm slathering myself with lotion in the morning, and using ultra-moisturizing soaps/washes in the shower.

I feel like a broken record.  Moisturize this, moisturize that....

Anyways, I do have some good news to report.  Last Friday, we had a check-up with my team.  It was day one of round two of chemo, and I had a lab draw for a CEA check.  I didn't sleep the night before, worried about how that was going to turn out.

When the team walked in, Dr. K. was with them.  As I was only supposed to meet with Kia (my PA) and care team, I was more than a little worried.  What bad news did they have to deliver now?

None.  My CEA dropped from 101 back in December to 14.6.

Let me repeat that.  My CEA dropped from 101 to 14.6!!!

I was shocked, speechless, and in disbelief.  I immediately asked them to rerun the test.  There had to be a mistake.  There was no way....NO WAY....that my number had dropped that much in a month's time.  We chatted some more about how I was feeling, and Dr. K said that he took more stock in the fact that I'm feeling better and better each time I see him than he does in a single data point.  But, to be sure, we were rerunning the test to ease everyone's minds.

An hour later, we had our answer.  The next CEA level came back at 13.7.  13.7!!!!

I don't know if it's sunk it, even now.  My number dropped by 80%, by over 86 points.

Honestly, I'm floored.  I think I'm still in shock.  I will feel much more confident about it when we get a second CEA back (later this month) with similar numbers.  Having another result like that will help me feel much better about trusting those numbers.

Even still, I can tell you.....it feels freaking amazing.  Just amazing.  It made walking into the infusion room a whole hell of a lot easier, and it makes swallowing the Xeloda a lot easier each day.  Maybe....maybe, this is the break I've so desperately needed.

I do still feel like there is always this part in my brain that is waiting.  Waiting for the next reaction, waiting for the next blood test to come back negatively, waiting for what lies ahead.  I've been through so much over the past 6-7 months, that just freely and completely accepting this good news is very, very difficult to do.  I am waiting for the other foot to drop, so to speak.

On that note, I'm still dealing with this new body of mine.  It's still my body, but there are times lately when I just don't recognize it.  Why?

Well, in the same 6-7 month period, I have lost well over 35 pounds.  As a result, I have dropped 4 pant sizes.  I had to go jeans shopping this weekend because the clothes I have been wearing are literally falling off of me.

*****This next part is going to be hard to type, and may not make it into the blog post at all...we'll see if I have the courage to post it...*****

All right - I decided to post it.  I did promise to be honest on this blog, and I think this is part of that.  Don't judge me.  Just, please....don't judge me.

I can't even believe I'm going to type this, but here it goes.  I was up into a size 16/18 pants, depending on the style.  I have been used to shopping in the women's clothes for most of my life - I was always/usually in the smallest sizes there, but it was pretty seldom that I shopped in the ladies or juniors department.  I frequented Lane Bryant, Torrid, etc. for clothes, and even then, I didn't always find what I was looking for.  I usually fit in between the two departments (almost too small for womens, just a bit too big for ladies).

This weekend, I bought size 12 jeans.  Several pairs, some that are going to get returned.  I am having to buy smaller tops (sizes medium or large), because my current wardrobe is hanging off of me.  I tried on a few size 10 jeans this weekend, and they almost fit.

As I have started dressing this new body with the new clothes, it's almost like I feel like an imposter.  I don't know this body I'm in.  I wore a new pair of jeans yesterday - they are slim cut, sassy little design on the back pockets, adorable little detailing on the front, and a fun wear pattern on the thighs and calves.  Very "in" style.  I then tucked my shirt in and wore a belt.

I literally cannot tell you the last time I left the house a) wearing a belt, and b) with a tucked in shirt.  I did this yesterday, and walked around, asking my friends at CTCA if I looked okay.  They were all amazingly generous with their compliments, and it helped, but I still feel like I don't belong in these clothes.  I'm hoping that, as I continue wearing these new smaller sizes and trying out new styles, I'll get more comfortable with it.  We'll see.  Between the new size clothes, the newly (though extremely cautious) confidence, and the vain concern about how my Erbitux rash is making my face look, I really feel like I'm learning a whole new body.
It's so odd.

I had an evaluation with physical therapy last week.  I expressed my concern that my weight loss is solely from muscle loss; she reassured me that this is likely not the case.  I'm still able to function in life, meaning I'm able to walk, I have good balance, I can do household chores (grocery shopping, laundry, house cleaning, etc.), and I was able to do a lot of the eval tests without much difficulty.  She thinks a lot of my issue is related to endurance, and we need to reteach my heart and lungs to work.  I'm simultaneously looking forward to and dreading these "workouts," but am super excited because I set two long-term goals with her.

1) I want to go back to work.  I need to, for my own mental well-being.  I miss my team, I miss feeling productive, and I miss that sense of normalcy.

2) I want to get back to running.  I miss that time to myself, that knowing that I'm doing something I love, and that complete understanding that I'm making my body stronger (and thus, better able to fight off the cancer).

She seems to feel that these are not unreachable, and that with some work, I can reach both!  Woot!

There was some sad news this past week.  The colon cancer world lost two amazing souls, Gloria and Debbie.  I was shocked by both.  That's compounded by the fact that there is another shining star in the colon cancer world that is spending her last days on earth with her family and being watched over by hospice.  Kathryn was my Imerman Angel, and became a lifeline for me when I needed someone to talk me down from the ledge or walk me through what the doctors were saying.  The loss of Glo and Deb, along with the impending loss of Kathryn, has weighed heavily on my mind and on my heart lately.  I won't lie - my sorrow and grief are compounded by survivor's guilt.  Why them?  Why me?  I'm trying to use those feelings in a positive way, and reach out to other survivors and help them as those amazing ladies helped me.  I hope I can make them all proud.

Let's see...what else?  I can't think of much.  I *will* try to be better about updating this blog, and keeping better track of how my treatment is going.

Here's to an amazing 2014, for all of us!!!

Comments:

Carol Pack Urban said...

I read just to the part about your CEA dropping! FREAKIN WONDERFUL! WOW! WOW! WOW!!!!!!!!!

January 8, 2014 at 9:38 AM

 Page Turnings said...

I've been following your blog for some time and it's so heartening to hear that you are feeling good! I so hope it stays that way and that you can enjoy every moment with your family and friends! Great news!

January 8, 2014 at 5:05 PM

 Joan B said...

YOU GO GIRL. A hundred hugs from the east coast. Listen, a million billion people didn't die today and we are not feeling guilty. There is no rhyme or reason to this crap. ENJOY!!!!!!!!

January 8, 2014 at 5:48 PM

 Joan B said...

by the way, I did not mean to dismiss your sadness and grief for your friends. Incredibly sad.

January 9, 2014 at 1:43 AM