DECEMBER 23, 2013

Christmas Eve Eve, and Erbitux Update

Well, after spending 8 hours sorting and wrapping gifts yesterday, I am still not done (though I did make good headway yesterday).  Between what we got the kids and what others have helped us with, the kids are going to have an absolutely epic Christmas.  I almost don't want to wait until Wednesday to give them anything, but I will.  That's the fun in getting to be a parent, is the knowing and the anticipation.  :)

I thought I would update quick on my Erbitux rash.  In typical Michelle-fashion, the rash isn't anything like the last time.  I remember the pain when the rash kicked in on my face, and crying (well, sobbing) in the urgent care at CTCA because the pain from the swelling was so bad; I couldn't smile, couldn't talk, couldn't breathe without my face hurting.

This time?  I do have some ickiness around my nose, and my entire face is dry as a desert, but the majority of the rash is on my shoulders and back.  I assume I have some on my scalp, since it's always itchy and tender.  But, the rash is pretty much on my shoulders and upper torso, front and back.  Big fun.

I don't know how the rash will manifest itself moving forward.  I am off the Erbitux until Jan 3rd, and finishing up with the Xeloda this week.  Starting Jan 3rd, assuming my CEA isn't skyrocketing, we will continue this for another round or two, and then do a CT scan to see where things stand.  I'm hoping that, between the steady Erbitux routine and continuing the antibiotic, the rash will start to normalize and calm down a bit.  But, who knows....it's me, after all.

Other than that, I'm still feeling good.  It should come as no surprise to anyone that I'm always overdoing it.  I feel so good that it's hard for me to remember that 5 or 6 weeks ago, I was in the hospital, unable to stand on my own and unable to walk completely without the walker.  Now, for example, Levi and I were out shopping all day on Saturday, and while I took the walker as support, I was not completely bent over, leaning on the walker to function.  It now serves more as a secondary support, and gives me a seat when I need it, which I didn't, even after walking the entire length of thee mall.

Wrapping gifts yesterday was uncomfortable, but I think that was as much due to the seat I was in as anything.  I'm not complaining, though.  I still feel better than I have in months.  I'll take what I can get.

And, on that note, I have things to get done today, so I'll sign off.  More this week - meantime, to all my amazing friends, thank you for another wonderful year.  It's solely with your thoughts, prayers, and good mojo that I've made it this far.

Merry Christmas Eve Eve, my army.  I adore you all!

DECEMBER 19, 2013

Chemo #2 (or something like that)

Well, I have to say that, in good Christmas news, I feel better physically than I have felt in months!  I'm not sure how it happened, or why it happened, or how long it will last.  All I know is that, for right now, I'm in a minimal amount of pain (knocking on wood as I type this...), my energy level is up, and I feel more like ME than I have in many more months than I care to count.

And, that's after I had chemo again on Tuesday.

As I said, I'll take it.

Infusion on Tuesday went well.  There were a few hiccups with timing and getting the orders into the system, but those were really very minor glitches in the grand scheme of things.  My platelets were at 104 (woot!), my other counts were at really good levels, and my infusion on Tuesday went off without a hitch.  All in all, I can't complain.

Okay....I'll complain a little.  The Erbitux rash is starting to kick in, and in typical me-fashion, it isn't hitting me in the same areas it hit last time.  I've had the tight, itchy skin on my face (mostly my cheeks and nose area, and around my mouth) for about a week now, but I seem to be able to mitigate that with some calendula lotion (script from my naturopath) and a quick change-up of my makeup (because, underneath it all, I'm still a girl who refuses to leave the house with no makeup on).  My scalp is becoming pretty itchy, especially over the past few days, and I've noticed that my back is dry and itchy.  However, the Erbitux rash has laid clain to my upper chest area, right around where your collarbone is and just below that (I believe it's called your decolletage).  The rash has hit me full-force there....luckily it doesn't hurt....it's just ugly.  *sigh*  I keep telling myself that the more the rash kicks in, the more the chemo is working.  But, I'll be honest - when you're looking in the mirror....that doesn't help.

In talking with Kia, my PA, this week, it looks like I should expect to see the rash kick in some more over the next few days.  I am definitely seeing an increase in the dryness on my face and scalp, especially the past day or two.  But, as I said, I'm feeling really good otherwise, so it's easy to overlook that other stuff.  For the most part, anyways.

We've started talking about getting me back into physical therapy, to try to rebuild my muscle strength.  I keep losing weight - I'm down to the lowest I've been in many years, and at last count on Tuesday, I'm down 35 pounds (or 12% body weight) since May.  I keep dropping, but slowly....everyone is keeping an eye on it, but none of my medical team seems overly concerned.  They all believe that, with everything I've been through, my body's use of energy (food and stored fat) has changed.  My metabolism has shifted, and my muscle tone/structure is a lot less than it was say at this time last year.  We are going to do some sort of electrode scan of my body, giving them a view of what my muscle mass is versus fat versus water weight, and use that to start my PT routine.  I'm looking forward to seeing where I am, and what I need to do to regain some of my strength.  I have to say, I do enjoy being down so much in weight.  For the first time in as long as I can remember, I'm wearing sizes smaller than an XL, which is mind-boggling.  My MIL and I went shopping last week, and I tried on my typical XL.....and it was way too big.  I ended up with several tops in a large, and jeans in a size I've only dreamed about wearing.  It's crazy, but I'll take it.

What else?  I think that's about it - everyone seemed really pleased with my improvements.  I actually walked around CTCA all day without my walker on Tuesday, which was a HUGE victory for me.  And, I wasn't stooped over like I have been - I was able to stand upright, which is a luxury I've not had in a while.  It's something you tend to take for granted....that ability to walk.  When it's taken from you, it's a loss you've never imagined.  When you get it back, it's such a gift.  I can't tell you how excited I was to walk into the bank the other day, completely upright and without assistance.  As we were walking around CTCA on Tuesday, I kept saying that this was my own Christmas miracle.  I'd like another one (cancer shrinkage), but for now, I'll take this.  The other can be my New Year's miracle.  :)

I'm off to get things done today.  My MIL, who has been here for almost two months, headed home today.  She has been a huge help to us, and it was nice being able to spend time with her.  Today's agenda are to get the house back in order a bit, pick my car up (oil pump went this week - it's in the shop right now), go to Kevin's school to help him with a science experiment/presentation, and maybe get some more shopping done.

Crazy, right?  Not too shabby for a chick who couldn't walk the length of her house two weeks ago.

See - my own little Christmas miracle.  As I said, I don't know how long I'll have this for, so for as long as I'm feeling good, I'm going to take it.

Happy Thursday, my friends!

Comments:

Lisa said...

I'm so glad you are feeling better Michelle. Merry Christmas!

December 19, 2013 at 9:32 AM

 Melanie said...

Woo hoo! Love it! We'll take miracles one at time.... because if they come one at a time, then that means everything is moving in the right direction! We're keeping up the fight for you, Michelle! Your Army is strong and as ready as ever... Love you! Wishing you all the Christmas spirit and love this holiday season!

December 19, 2013 at 9:45 AM

 Carol Pack Urban said...

I know you hate the Erbitux rash but overall your outlook and physical ability seems amazing to me! I'm so happy for you right now!!!

December 19, 2013 at 1:55 PM

 Tina said...

Wow! You are doing great! So glad to hear it! Enjoy the holiday season with your lovely family!

December 22, 2013 at 3:49 PM

DECEMBER 11, 2013

Results, and Chemo Day 1

Yesterday, I walked into CTCA with a sense of trepidation and fear.  I had no idea how the day was going to go, so I just put one foot in front of the other and hoped for the best.

Results were pretty much what I expected.  Tumors and lymphs have all grown in number and size, although the largest of them is still around 2-2.5cm.  I also have some new spots on my liver (this doesn't make me happy), but they are still small...too small to biopsy.  And, the spot on my abdomen is definitely a tumor.

My CEA is at 101....close enough to 100 that I didn't freak out.  Ironically, my platelets are also at 101.  My whites and reds are where they need to be, so we were able to proceed with chemo yesterday.

The appointment with my team was hard.  I wasn't super surprised with the results, though I was hoping for more stability in the tumors.  The spots on my liver were apparently there last CT in August, which Mom, Dad and I don't remember hearing about.  Anyway, once we got the results and started to move forward on talking about treatment, I asked them to stop for a moment.  I needed to process and to cry.  My mom was holding my hand, and my doctor put his hand on my back, comforting me.  After a bit, I was able to regroup and move forward.

Decision was made to definitely start Xeloda and Erbitux.  Xeloda is being shipped in by my insurance company, and I'm supposed to have that sometime today.  I was able to get the Erbitux yesterday.

That, in and of itself, was nerve wracking.  I was so scared - will I have another reaction?  What happens if I do?  I made the decision to take some Ativan to calm me down, and they also gave me Benadryl to counter any potential allergic reactions.  Luckily, I slept through the entire 2 hours, and then came home and slept some more.

I'll tell you what - that's definitely the way to go through chemo.  :)

Last night, I wasn't feeling too bad.  A little grumpy, but not sick (thankfully).  I slept pretty well last night, although I woke up with a killer headache this morning.  I'm thinking it's a sinus thing....I actually went back to sleep for another 2 hours this morning after the kids left, and while I still have the headache, it's no where near as bad as it was when I woke up this morning.

I'm currently waiting for the Xeloda to be delivered so I can take my first dose - I might end up only taking the nighttime dose today, which is fine.  Nothing I can do about it.

How am I doing, you ask?  I'm okay.  Now that those bumps in the road I talked about are behind me, I'm feeling more calm.  I know where we are in regards to my cancer, and I know what we have to do to fight it.  I'm still scared - I'd be stupid if I said I wasn't.  But, I'm trying to be hopefully realistic.

So, my army, here we go.  We are back in fight mode....

Comments:

Joan Bardee said...

Well, you know the results and while they were not cause for celebration, it sounds like you have a plan. It's a hard plan, but a plan. I'm thinking of you!!

December 11, 2013 at 5:49 PM

 Carol Pack Urban said...

I agree with Joan. Never give up! Prayers sent up for you.

December 11, 2013 at 9:30 PM

 Tambre said...

Love you, Michelle. Great approach to focus on the plan and your one foot in front of the other, one day at a time while your tribe sends big, huge hugs and tons of positive energy!! Your attitude is so amazing and we're all pulling for you.

December 12, 2013 at 8:38 AM

DECEMBER 9, 2013

CT Scan Today

Happy Monday, my peeps!  I'm sorry I didn't update you sooner, but I needed time to wrap my head around the appointment on Thursday with Dr. Kundranda.  And, if I'm being totally honest with you (and me), I wanted to ignore what was coming up.  Kind of like burying my head in the sand....if I didn't think about it, I didn't need to worry about it.

Well, no more of that.  Today and moving forward, I don't have a choice but to accept what's happening and move forward.  So, here it is.

During the meeting with Dr. K. last week, we found out that my blood levels are recovering.  My platelets are at 98, and my whites and reds are back to normal.  So, yeah!  Very exciting to hear that.  Everyone seemed pleased about that.

I did talk with him about the spot in my abdomen.  He examined it, and agreed that it's likely a tumor (I think he was hoping it was a hernia....).

So, to figure out what's going on, I am having a CT scan later today.  I scheduled it late, so that I wouldn't be tempted to look at the report and freak myself out.  I am going to ignore it (or try to) until tomorrow, when we meet with him again and get the results of the test.

I'll be honest....I have two different thoughts on this.

1 - I'm frightened.  Actually, I'm scared shitless.  I don't want to see what's happening.  It's been kind of nice not knowing - if I don't know, I don't have to worry about it.  I know that's cowardly and not at all like me, but living my life without worrying about my tumors, my CEA, and what chemo is next has been, quite frankly, really nice.  But, that's not going to last.

 2 - I know the cancer is growing.  I'd be lying to myself if I didn't acknowledge the fact that, without chemo (for almost 6 months now, with the exception of the one month of Temodar), my cancer is growing.  At what rate, we just don't know.  But, between the potential tumor in my belly and no chemo, I have to assume that everything has grown.  Again - it's terrifying, but saying it, talking about it, recognizing it.....I'm hoping that helps tomorrow when we are faced with the reality of what's actually happening.

The plan, as of last week, is that I'll start chemo tomorrow.  Unless something drastic happens and he makes a last-minute decision, Dr. K. wants me to start on Erbitux and Xeloda tomorrow.  I've been on both of these before, so I'm hopeful that I don't have yet another reaction.  The Xeloda is an oral chemo, taken twice a day.  I've been on that before, for quite a while, and didn't have many issues.  And, the Erbitux - that's the one that makes you break out in an acne-like rash.  Strictly from a vanity standpoint, I'm very much not looking forward to this.  The initial breakout hits pretty quickly, and hurts like a beast.  I'm hoping it's a bit easier this time, as we will be doing it weekly, instead of every other week.  The hope is that by giving a lower dose weekly, rather than the higher dose every two weeks, I'll have an easier time of it.  I hope they are right.  Last time, the pain and discomfort was so bad I ended up in the urgent care of CTCA, crying my eyes out because it hurts so bad.

Needless to say, the past few days have been filled with anxiety, worry, and fear.  I've tried to ignore the upcoming events, but my brain doesn't work that way.  My poor stomach has been nauseous all weekend, and I can only imagine it's because of the anxiety.

I'm trying to take everything one step at a time.  Deal with the CT today.  Tomorrow, deal with the results meeting.  Take time to cry and regroup.  Then, deal with the chemo.

*sigh*

I'm ready for a break.  I'm worried about having another reaction.  I'm worried about how I'm going to handle this new regiment, given that my body is so weak.  This pain I'm having isn't giving me much of a break, in spite of an increase in pain meds.  I think the next step with that is a complete re-do of my meds, meaning we stop all current meds and start new ones.  Maybe then I'll get some relief, and be able to sleep.

Gosh - I feel like I'm just rambling, talking all over the place, making no sense. Sorry about this.

I woke up yesterday to find out that I lost two friends to cancer in less than 24 hours.  Lynn had been battling breast cancer for over 20 years, and the last few years had been particularly tough on her.  She was such a sweet lady, and she and her husband were so much in love.  I'm heartbroken for Bill, and hoping for peace and comfort for him.  Danielle was 26 years young, and battled ovarian cancer.  She left behind her husband and their four-year-old son.  It's just not fair.

I posted on facebook yesterday that one of the hardest things about this cancer journey is losing the friends you make.  It's true.  And, given what I know, and what I'm facing, it's hard not to imagine me being the person that people are posting RIP's for.

Don't get me wrong - I still have hope, and know that my docs have many plans for me.  But, when you're in this situation, you have to face the reality that this may be the last Christmas you have, for example.  That's been on my mind a lot lately.  What if this is the last one I have with my family?  I can't imagine....

There's so much that goes through your mind, and I don't even know if I can put to words what I'm thinking, feeling.  You want to have hope, and you want to get back into fight mode, but it's hard when you see the people mourning those you just lost.

Right now, sitting here in my pajamas, I'm kind of just stuck.  I'm dreading the CT today.  I can't lay flat on my back, and I need to for 15 minutes.  They are working on some meds for me, to relax me and to help me with the pain.  That's my bump in the road for today.

Thinking about getting the results tomorrow is terrifying.  Luckily, both of my parents will be there, to help me remember details and to ask questions I don't think of.  I know the news isn't going to be good.  That's going to be one of the bumps in the road tomorrow.

Getting the infusion of Erbitux tomorrow, worrying about how I'm going to react to that and the Xeloda....that's another bump in the road.

For the next 24 hours, it's going to be very difficult to get into fight mode.  The fear, the anticipation, the worry....it's completely overwhelming.

I'm hoping that once we get through the next 24 hours, and the anticipation is gone because we've dealt with everything, I'll feel better about what's happening.  I'll have answers on what's going on inside this body of mine, and I'll get back to fighting once they start the chemo.  Right now, it's all just too much.

So, I'm going to try to take it step by step, and remember that I've been through much worse.  I've had to deal with all sorts of horrible things, and I've made it this far.  I can make it through a CT scan (with medical assistance...) and get back home with my family tonight.  Then, tomorrow, I'll deal with whatever the scan shows, because that's what it is, and I can't do anything about it.  Whatever the CT and CEA show is nothing more than a new baseline for us to start from.

Between you and me, I'm hoping my CEA is below 100.  I've tried to convince myself that I'll be happy if it's below 1000, but I really, really am hoping that it's below 100.

And, with that, I'm off.  I have things I need to do for Christmas, and life must go on.  That's the bottom line.  Whatever happens in the next two days, I know that life will, without a doubt, go on.  It must.

And, it will all be okay.

Comments:

Page Turnings said...

My thoughts are with you on this rough day. Deep breaths in and out.....

December 9, 2013 at 1:24 PM

 Michael D Wieland said...

On behalf of your Upstate NY Army, my thoughts and prayers are with you and your family. I hope the CT goes well, and the results are better than expected...

December 9, 2013 at 1:48 PM

 Joan Bardee said...

I think and hope that you are right. Just learning and facing whatever "it" is will be better than this horrible unknown and uncertainty. You know I am hoping for the best for you.

December 9, 2013 at 4:53 PM

 Christy Lee said...

Michelle I am sending all kids of positive thoughts your way and hoping your numbers are 100. I can't imagine how difficult this time is for you but I have learned from reading your blog that you are one of the strongest people I have "met". I hope all goes well tomorrow.

December 9, 2013 at 5:47 PM

 Heidi H. said...

Thinking of you as you go through this. (((HUGS))) from Tennessee.

December 10, 2013 at 8:48 AM

DECEMBER 2, 2013

Cyber Monday

It seemed appropriate that I update my blog on Cyber-Monday, as I sit here, trying to determine if I really need everything I just put into my cart on Amazon....and Target....and a few others.

Anywhoo....how are you all doing?  It's been a while.  I suck at updating this.  I promise to try to get better.  :)

So, what have I been up to?  Well, not much.  Trying to keep ahead of the pain, trying to recover, and trying not to worry about the next steps.  I know we have treatment coming up - I can feel something in the left side of my abdomen...it's tender and feels like a lump or something, so I'm going to bring that up to my doc on Thursday when I see him for blood work and a follow up.  I'm sure I have a CT or PET scan in my future.  Again, I'm trying not to think about it.  It's scary, because I know for a fact that the cancer is growing inside of me.  I have no doubts.  I'm trying to get my head around that, so that when we get the results, I'm not completely and utterly shocked by what they say.  I've decided that if my CEA is below 1000, I'll consider it a good day.  I know that's a super high number, but I feel like I have to set goals for myself to feel successful, and setting the bar that high seems like a good way for me to reach a goal.  So, I'm hoping for a CEA of less than 1000.  *sigh*

It's hard, the not knowing.  But, it's also been wonderful, not thinking about it (all the time), and not scheduling everything in life around treatment, doctor's appointments, and wondering how I'm going to feel on a certain day based on treatment.  I know those days are coming - they have to be.  For right now, I'm just enjoying the break and trying to make the best of my down time, so to speak.

The back pain has increased.  I'm completely dependent on the walker now, which sucks, but when I have it, I can get around much better.  Because it has a seat, it allows me the breaks I need now and then.  I'm hopeful that, someday, I might be able to walk without it again, but I don't think that time is coming up soon.  I need to get stronger, and I need to get ahead of this pain.  I'm starting to wonder if the pain I'm feeling has something to do with the mass that I can feel in my abdomen.  My lower back pain is definitely still there, but I also have this muscle pain in my mid-back, which is sometimes more painful and more awful than the back pain.  I'm working with my pain doc to try to figure out a combination that works, but I feel like just when we get ahead of it, it gets worse or changes and we have to start looking again.  It's extremely frustrating, but I'm learning to live with the pain and to live in spite of it.

I'll tell you, though - I'd give a limb to have a day without pain, without the cancer, without this burden on me and my family....

Anyways, I'll tell you something cool that happened this weekend.  I won tickets to go see Garth Brooks in concert in Las Vegas!  After some debate, I decided to ask my mom to go with me, and she and I spend this past weekend (Friday and Saturday) traveling to/from Last Vegas to see Garth in his last concert there at the Wynn Hotel/Casino.  It was a spectacular concert....the show was televised on CBS live (you may have seen it, and Mom and I were briefly on television....), but what was seen on tv didn't hold a candle to the live show.  It was just amazing.  His show was basically him talking about and singing the songs from his life that have had an influence on his music, so he covered music from the 60's to the 90's.  He also did a few of his own songs.  After the television cameras went off, he continued to sing for us.  And, during the show - his wife, Trisha Yearwood, came out and sang with him as well!  I was floored - I had no idea she'd be there, although in hindsight it makes perfect sense.

It was an awesome trip.  I am so glad that my mom and I were able to do it - such wonderful memories.  And, we stayed at the Bellagio, which I'd highly recommend.  Just a gorgeous hotel with fabulous amenities and beautiful rooms.

All right, let's see what else has been going on?  I've just been taking each day as they come.  My mother-in-law, who so kindly came down from NY to help out while I was in the hospital, spend the Thanksgiving holiday with my sister-in-law in Milwaukee, so I've been getting back into the routine of getting the kids up in the morning and off to school, and then picking them up, doing homework, getting dinner ready....basically, just living life the way it's meant to be lived.  It's been wonderful - exhausting, but wonderful.  My MIL comes back into town tomorrow for a few more weeks, so it will be fun to share some of our holiday traditions with her, like our town's Christmas celebration (which happens this weekend - yeah!), gingerbread decorating (also known as eating the frosting and candies before they make it to the houses), and shopping for family and friends.  I'm hoping to do a few crafts this year with the kids, so we'll see if that works out.  :)  Sometimes, my plans far outreach what I have time and the ability to do.  Stupid pinterest.  LOL!

I think that's about it.  As I said, I have a doctor's appointment on Thursday to do blood work and talk about what's next.  I know it's not going to be a fun discussion, and that's okay.  It has to happen.

Oh!  I know what else I wanted to share!  I found out that both kids got accepted into Camp Kesem (the cancer camp that Jules attended this past summer)!  They are over the moon that they get to go, and I was so excited to tell them!  If you are a parent and a survivor, please take a look at Camp Kesem - they have camps all over the country, and it's free!  Such a wonderful experience for the kids, and it warms my heart knowing that such a horrible situation for our family can be turned into wonderful memories for them!

Happy Holidays, my army.  You know my house has been decorated for a week, and I'm on the prowl for more stuff.  I love this time of year....

Comments:

Joan Bardee said...

Thanks for the update. I swear I do not stalk your blog but I am home recovering from a fever (nothing) and surfing the net today.

I'll be thinking of you later this week and hoping for the best. You deserve it.

December 2, 2013 at 11:13 AM

 lisa pfab said...

I have been waiting for an update, praying for pain relief.

December 2, 2013 at 1:42 PM

NOVEMBER 14, 2013

No news is....not always good news....

Well, as you may have already guessed, no news from me isn't always good news.  I'll try to give you the quick rundown of how the past month has gone for me.

As you know from my last post, my platelets were being very finicky.  On Tuesday, October 16th (I think that was the day - we'll pretend it was...), I went into the doctor's office with plans to have my blood counts done and to get two units of platelets, in preparation for our planned vacation to California the following day.  My body had different plans - my platelets were super low again (2, I think), my whites and reds were low, and I was running a fever.  All of this added up to me being admitted to the hospital at CTCA.  There was concern about the fever (I was obviously fighting something that my body couldn't fight off on its own), and with the rest of my numbers still being super low, there was a lot of concern about what could happen.  So, after coordinating care for the kids (they had that day off and were with me at the hospital when I had the appointment), getting home to get some creature comforts (like pajamas, my own shampoo and toothbrush, and some things to do) and having Levi drive me back down, I was admitted.

It was tough - I didn't want to cancel the trip to CA, but it was obvious that my body wasn't physically able to handle the travel, much less the activities that Three Little Birds 4 Life had planned for us.  Looking back, my body was so weak, so tired...being in the hospital was the right thing to do.

So, long story short, I was there for 22 days.  You read that right - over three weeks.  My body took a while to recover.  Dr. K. thinks that the Temodar I was on caused my bone marrow to go into hibernation (a known but seldom seen side effect of the Temodar....of course), and it took a while for my bone marrow to start working again.  Results from the bone marrow biopsy showed that my marrow was only working at 5% capacity, which meant that whatever was being used/died in my body (i.e., my white cells being used to fight infection) were not being replaced at the rate they were being used up.

I'm home now - I came home a week ago, and it's taking me a while to get back into the groove.  My back was killing me - mornings are awful.  Basically, laying flat/on my side all night causes the muscles to relax, and moving them in the morning is just painful - I can't even stand up straight in the morning!  But, I've already met with the pain doc at CTCA, and we've tweaked my pain meds to help me function better.

It's been amazing being home with the kids.  I think the hardest thing about being in the hospital was being away from my family.  We used Google Hangout each night to keep in touch, and Levi and I talked on the phone several times each day, but it just isn't the same.  I missed Halloween with the kids (damn it), but I got some pretty cool pictures of them in their costumes.

We are finally getting in the groove of being home together, and working around my issues.  My mother-in-law came into town to help us out, and will be here for a few more weeks.  The help we've received from everyone has been invaluable....I don't know how we would have done everything without them.  I'll be eternally grateful for the help, both here at home and while I was sitting in the hospital, waiting for my damn marrow to wake up.  :)

No plans for anything right yet, as far as chemo or treatment goes.  I need to recover more - my platelets were at 30 on Monday, which is amazing for me but still super low (they are supposed to be at least at 140...).  I know that the cancer is still in there...I'd be stupid if I didn't acknowledge that.  But, worrying about it isn't going to help and isn't going to stop the cancer.  So, right now, I'm focusing on my bone marrow recovery.

More in a bit - I've got another lab draw today, and I'll let you know how things play out.  Meantime....have a fabulous day!

Comments:

helen said...

Good to hear from you again! I'm one of those anonymous followers who love your spirit, love to follow, and I'm so grateful for your blog and your honesty and sharing. So glad you are back home with your family. Take care.

November 14, 2013 at 9:49 AM

 KA said...

Keeping you and your family in my thoughts and prayers, today and everyday! XOXO

November 14, 2013 at 11:45 AM

 Penelope said...

So glad to hear from you!

November 14, 2013 at 3:32 PM

 Joan Bardee said...

I am so glad to hear from you but sorry that you were so sick. Major hugs.

November 14, 2013 at 6:48 PM

 Page Turnings said...

Another anonymous follower here who is glad to hear from you! I am hoping your numbers start to move up quickly and you get some more energy back & less pain. Xoxoxo

November 18, 2013 at 8:34 AM

 Victoria Hope said...

Michelle, I am sorry to hear about your recent hospitalization but very glad to know you are back home and recovering once again. Your indomitable spirit is inspiring. I'm only five months from NED myself and have been reading your journey for the last year. We don't know one another, and I'm certain that I am only one of so many internet strangers that feel like they know you and share in your struggles and accomplishments. I hope you have a wonderful Thanksgiving with your family.

November 27, 2013 at 2:31 PM

 Penelope said...

Happy Thanksgiving Michelle to you and your family!

November 28, 2013 at 8:39 AM

 MelB said...

Hey Michelle, Hope you're recovering well. Miss hearing from you but understand you're probably just trying to get well for your family. xx

December 1, 2013 at 1:11 AM

OCTOBER 9, 2013

My platelets suck...

Some of you may have guessed that no news isn't always good news, especially in my world.  It's been a rough couple of days - I'm not going to lie.

My lab work wasn't good.   My CEA is up to 25.something.  I can't even remember anymore.  And, the more acute issue that I wasn't even aware of?  My platelets are dangerously low.

When I went in to meet with Dr. K. on Friday, it was pretty obvious we had issues.  When they all walk in with "that look", you know it's not to share good news.  While we are concerned that my CEA has spiked (which I hate hate hate hate), the platelets is a bigger issue.  Typically, your platelet count should be at 150k.  On Friday, mine were at 13k.  They were pretty surprised that I was still standing, wasn't bruised or bleeding.  After some discussion, it was decided that I would have a transfusion of platelets, with the hopes that it would boost my numbers and jump-start my production.

As luck would have it, that didn't happen.  The platelet transfusion was simple, about a 90 minute process from start to finish, once they had the blood type-and-screen done.  (In case you''re wondering, I'm blood type B Positive....donations welcome.)

Decision was made to wait until Tuesday (yesterday) to take blood again, to make sure my numbers bounced back to normal.  I was scheduled to see just the PA, Kia, which was fine.  I think we all assumed that my numbers would rebound, and I would be allowed to travel to Miami this week for the CCA conference I've been looking forward to for 4 months.

When Kia walked in yesterday and said Dr. K. would be in momentarily, I knew things weren't good.  She let me down easily.  My platelets were at 3k.  147k below where they should be.  I didn't even know what to say.  I was shocked.  I had hoped that the numbers would rebound a little, not drop by 10k in 4 days.

To say I was upset would be an understatement.

Let me back up.  I know I wasn't sure what platelets do.  Here's some information about why low platelets (thrombocytopenia) is dangerous.

Thrombocytopenia is the medical term for a low blood platelet count. Platelets (thrombocytes) are colorless blood cells that play an important role in blood clotting. Platelets stop blood loss by clumping and forming plugs in blood vessel holes.
Source: http://www.mayoclinic.com/health/thrombocytopenia/DS00691

So, you can understand why my numbers being so low is so dangerous, right?  *sigh*

During my meeting with my docs yesterday, it became pretty apparent that this is a huge issue.  And, it's not just the fact that the numbers are low - the big concern is WHY the numbers are low.  There appear to be a variety of reasons, which they are investigating.

In a very small population of patients on Temodar, dangerously low platelets count have been recorded.  My numbers could also be low due to a couple of auto-immune disorders, which are uncommon but not unheard of in colon cancer patients.  They are also looking to see if there is a basic, fundamental issue with how the platelets are being formed in my body.

They took 10 vials of blood from me yesterday (for a variety of tests, including 6 for a single send-out test to another lab).  10.  I jokingly said that, if they stopped taking blood, maybe my numbers wouldn't drop so much.  I don't think they found that funny, but sometimes humor is the only thing getting me through these obstacles.

I got a call last night that, after my transfusion yesterday, my numbers rebounded....a little.  As of last night, they were up to 11k.  It's better, but no where near where they need to be.  And, apparently, my now my hemoglobin has dropped.  I'm not even sure what that means, or what the next step for that will be.

Here's what I know.  I've stumped my docs, and that's not a place I like to be in.  They are confused, but I know they are doing absolutely everything they can do to help figure out what's going on.  We won't start chemo back up until my numbers stabilize, so there's no timeframe on that.  We did talk yesterday about whether continuing the Temodar is a good idea, and both Dr. K and I agree that this it didn't seem like a ood idea.  Based on what he and I talked about, I'm likely to go back on the Erbitux (the one that made me break out in a horrific rash) and Xeloda (the oral form of 5-FU).  The hope is that I don't have a reaction to those drugs.  *sigh*

Because of my issues, I had to cancel my trip to Miami for the Colon Cancer Alliance National Conference.  I can't even tell you how much this breaks my heart.  I'm just aching from this.  I wanted so badly to go to on this trip.  But, my doctors are concerned about me being so far away from home with numbers so dangerously low.  I wasn't going to cancel, but my heart and my head had a tough-love kind of conversation, and I need to be thinking with my head right now.  It wouldn't be smart to travel so far from home, especially when I'm trying to make sure I'm healthy enough to take the family to California next week.

We are supposed to go on a family vacation, care of an amazing organization called 3 Little Birds 4 Life, which grants wishes to patients battling cancer.  During my conversation with myself, and with my docs, I made the decision that the family vacation is the one I *really* want to go on, and I need to rest up this weekend and hopefully give my body time to heal so we can surprise the kids on Wednesday of next week with this amazing adventure.

This whole thing just sucks.  I want to be mad, but there's nothing or no one to be mad at.  That's very frustrating.  I want to have some control over what's happening, even if it just means that eating something or taking something or doing something could help boost the numbers.  Unfortunately, there doesn't seem to be anything I can do to help my body do what it's supposed to do.  That's infuriating.

So, I sit here, and wait.  I'm waiting to see if the lab work tomorrow will give us any indication as to what's causing this.  We wait, because it's mainly a process of elimination to figure out what the hell is going on inside my body.

I'm waiting to see if my back pain, which has kicked up (as well as the pain in my lower abdomen) is muscle related, or cancer related.  (Dr. K. dropped that on me last week, and I haven't even had a chance to process that part yet.)

I'm waiting to see if my body is producing good platelets, or if there's been some permanent damage done that will cause me life-long issues with this type of thing.

I'm waiting to see if I'll ever be able to go back on chemo.  I asked Dr. K. yesterday....what happens next.  He doesn't know.  We had a brief talk about whether we continue with chemo, which seems to be doing more harm than good.  That was a hard conversation for both of us to have.  Don't get me wrong - I'm not giving up.  I'm just voicing what goes through my head, and wondering where we go from here.

This just sucks.  My platelets are being douchebags, and I can't do anything about it.  I hate that.

But, I'll live with it.  The ironic part is that, for the most part, I feel good.  If I could get my lower back/abdomen pain in check, I'd feel great.  With the exception of one small thing (small pinprick marks on my legs, which are nothing more than an outward sign of low platelet counts), I don't show any signs of low platelets.  I'm not bruising easily.  I'm not light-headed.  I'm not dizzy or shaky.  I'm not bleeding.  I feel pretty good!  The docs seem to feel that's in my favor.  I guess I'll take that as a good sign.

I'm learning to come to grips with the fact that I can't go to Miami.  Cancelling the trip sucked.  It's just another reminder of how awful this is, and how little control I have over what's going on inside my body.  I just hope that I don't have to cancel my trip next week.  That will break my heart.

So, please keep me in your thoughts and prayers.  It's going to be a long week.  :)

Comments:

Joan B said...

I'm sorry about all of this. Hoping for a platelet rebound soon! Hugs

October 9, 2013 at 1:35 PM

 Thandi said...

A long week indeed :-( Hope..Just wish something positive will come up soon to restore hope that your body will rebound and that treatment will be possible without affecting you as drastically..Hope too that your pain goes away.

October 11, 2013 at 3:24 AM

 Amanda: said...

Well that's crappy news. Feel better soon... California is waiting for you :)

October 13, 2013 at 7:58 PM

 Emily Walsh said...

I was actually reading through a few of your posts and just wanted to be another source of encouragement to tell you to persevere and keep up the fight! I just had a quick question about your blog and was hoping you could email me back when you get the chance, thanks : )

Emmy

October 25, 2013 at 11:48 AM

 Ana said...

YOU ARE ALWAYS IN MY PREYERS. BIG HUGS FOR YOU.

October 26, 2013 at 9:57 AM

 Lorna Scott said...

It's been almost a month since your lost post. I hope we hear from you soon.

(((hugs)))

November 6, 2013 at 5:19 PM

 Penelope said...

It would be nice to see an update soon Michelle! Sending prayers for you and your family.

November 10, 2013 at 1:49 PM

 Christy Lee said...

Hope to hear an update that you are ok soon! You and your family are in my thoughts.

November 11, 2013 at 5:59 PM

 MelB said...

Thinking of you and, yep, worrying as well. You don't know me in real life but have been following your blog.

November 14, 2013 at 12:27 AM