Tuesday, April 30, 2013

APRIL 30, 2013


I just went for my first "workout" since this all started.  By workout, I mean, walking slowly around two blocks.  It wasn't much, but for me?  It kicked my ass.  My head wants to do more - my head wants to do my *normal* routine....walking/jogging 2-3 miles, enjoying the trip, blaring music.  This time?  I was happy that I made it through three songs on my phone.  :)

I'm going to have to work up to what I want to do, what I used to be able to do.  I desperately want to get back to working out 3-4 times a week.  I felt so good when I was doing that, and it would be an amazing miracle to get back to "feeling good" again.  I've been told that walking will help my back (although it hurts my back when I'm actually walking), especially if my pain is due to arthritis.  So, walk I shall.  Eventually, I'll be able to do more.

This next paragraphs are going to be fairly descriptive; if you work with me, please please consider NOT reading this.  Or, if you do, please don't let me know you've read it.  It's fairly embarrassing, may fall well into TMI, and will likely embarrass us both.  You've been warned.
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So, dignity.  Here's the deal.  When you go through a disease like this, you lose a lot of dignity.  There is nothing dignified about having doctors ask you, constantly, about your bowel movements, your urinary routine, your sex life.

Seriously.  It's awful.  There is nothing classy or wonderful about it.

As an example, Levi and I went away to Sedona, AZ this weekend.  It's a gorgeous town about 2 hours north of Phoenix, and is where you'll find the most beautiful, stunning red rock formations in the world.  I was worried about traveling that far from home, as there are some days when I can't even drive the kids 3 miles to school without having to stop to use the restroom (thank you, local gas station).  I did okay on the trip, most of the way, until Sunday.  Sunday, my body was angry.  My bowels were so angry that I had to stop and convince a bbq joint in Jerome to let me use the "not for public use" restrooms, and then again, 15 minutes later.  This time, there was no town, no restrooms.  I used nature.  I didn't have a choice.

Again....no dignity.  To have to tell your husband that you need to stop at the next pull-off is awful.  I'm still angry about it.  Angry at the cancer.  Grateful that he's willing to do this, and doesn't think any less of me because of it.  Embarrassed that I have to admit it, but also understanding that by speaking about it, it might help someone else.

So, yes.  I pooped in the woods.  There - I said it.  Classy, right?

*sigh*  I really, really hate this disease.

I can say that I'm still having diarrhea, but it's slowed down.  It usually hits around the time I need to drop the kids off at school in the morning (which sucks, but makes me eternally grateful for the gas station up the street), but it's getting better and better.  I think Sunday was bad because of what I had eaten all weekend.

So, there you go.  No. Dignity.

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And, there's another part of radiation that they don't tell you about, until you ask.  My care team is amazing.  They are really good about telling me things I need to watch out for, be concerned about.  One thing they didn't tell me about was dryness....down there.  Or, the potential of infection.

Yup.  I rang the end-of-treatment bell in radiation on Thursday, and was going in for IV hydration daily.  On the Saturday after bell-ringing, I was at CTCA for IV hydration, and thought I would talk with someone in the urgent care clinic about some of the symptoms I was having.  Well, after two hours and some test results finally coming in, I found out that I had open "burns" on the inside of my vagina, a bacterial infection brewing in there, and a bladder infection.

REALLY?!?!?!

So, I was on two different types of antibiotics (which don't help the diarrhea, by the way...) and a script to help with the pain.  Needless to say, I was surprised.  It wasn't what I was expecting.

Moral of this story - talk with your docs about any and all issues you are having.  You may not know what's causing them, but you'll be happy you mentioned them to your care team.

I think I've given you all way too much information for now, but I think it's important.  I have more stuff coming up, but I'll report on it once I have more information.  For now, just know that this has definitely been the hardest battle I've gone through, and I'm trying my damndest to pull myself out of this physical slump.

Comments:

Hon, I'm going to tell you that twice in the last couple of months I've lost control of my bowels and just could not make it to the toilet in time. Thank God I was home and could change my clothes! A couple weeks ago we were on a day trip at a rather large state park only to find out that in March they do not open restroom facilities which meant unless I wanted to experience another accident I would need to use the woods. Thankfully we carry a package of moist wipes in the car. Yes, I was embarrassed and humiliated but I was also angry that this happened to me. There's no rhyme or reason to just when a bowel movement will occur. It used to be 10-15 minutes after eating and now? It just happens. I'm really hoping I don't have to start using adult diapers. This really sucks.
April 30, 2013 at 12:41 PM
Blogger Jennifer Fisher said...
oh, my dear michelle...i can't see what i'm typing because of the tears...you express yourself so ultra-exquisitely that i don't want to stop reading your thoughts and cares, your concerns and your frustrations...all of it...i LOVE the photos from the bell ringing and am so sorry i couldn't be there. would you mind if i posted parts of your blog entry on my face book page? the world needs to know this cancer warrior, they need to know YOU!
April 30, 2013 at 4:55 PM
Blogger Michelle said...

Thank you, ladies. It does help to know others are going through this, and that's exactly why I post. I want others to know that they are *normal*, for whatever that means to us all.
And, Jenny? Yes - please share, and just let me know if you post this somewhere. I want to share with others, and would love to know! :)
May 9, 2013 at 5:51 PM

Monday, April 29, 2013

APRIL 29, 2013


I thought I'd give you all a little bit of an earworm today.  Fortunately, it's not gloomy or icky here - instead, it's gorgeous, sunny and warm...just a beautiful day!  But, I needed a catchy title (after 500+ posts, it gets hard to be creative...).  So, there you go.

I had a good weekend.  Levi and I went to Sedona for the weekend, and it was spectacular.  We had never been up there, and I wanted to something before this next phase of treatment starts.  Thanks to my parents, we were able to go.  It was just gorgeous!

I'm going to try to post more, now that I'm starting to feel better.  It's been just over a week since I finished treatment and rang the bell.  Hey - want to see some of the pictures from me ringing the bell?  :)  Pics courtesy of my amazing friend, Leah.

The final day of treatment was delayed because the machine went down, so there was a lot of drama and waiting (anxiously) for this to happen so I could ring that damn bell.  I know there is a  long road ahead, but man, did it feel good to ring that bell. 
This was as I was walking out, after having finished my final treatment.  What I love about this is that the team is behind me, literally, and there to support you through the tough times and through the celebrations.  
 
Ringing the bell, with Jules right there to celebrate with me!

You can't see it well in this picture, but I took Rodney (well, his CD) into the final treatment with me.  I cried as the first chords of "Going Thru Hell" played, and couldn't stop.  It was awesome, hearing that as I finished what was undoubtedly the hardest treatment I've had thus far.  

I love this picture.  I love how tight my little man is holding onto me, and me onto him.  

He didn't want to let go....and, Dr. Chong (my rad onc) stood right there with us as we celebrated this small but important victory! 

My rad onc team and my family - I love this picture.  

I can honestly say that radiation was the hardest thing I've had to do.  It was the combination of chemo and rads, but also, the area that was being radiated.  It was such a large area, and my body was just tired.  There wasn't much of a break (weekends off only, and even then, that doesn't give you the time you need to recoup), and the side effects just built up.

I learned a lot from this treatment.  I learned the art of resting, and accepting that it's okay to do that.  I learned that I still don't sit well, and that I need to have something productive to do while I'm resting.  I learned that it is important, essential even, to ask for help, and that it's a two-way street.  People desperately want to help you, and it's okay to accept that assistance.  It doesn't show weakness......rather, it shows a certain strength in putting your needs first, and in allowing others to do for you.  

I'm grateful for people who are willing to help.  I'm completely indebted to them.  I will do my best to pay it forward and to help someone else, as a way to honor what others have done for me. 

I think one of the other things that has hit me as I fought this battle was this....how I act, what I accept, what I reject, how I respond - all of these are lessons for me, but more importantly, for my kids.  I saw my children change over the past two months - they are more willing to ask for help, and to help me/others out.  

I love this.  

It's so important for people to recognize that we can't do everything.  We want to, and knowing it won't stop us from trying.  I know that I am still, even now, trying to do as much as possible. I think the difference is that I've learned that it's okay that the house isn't clean before I go to bed, or before someone comes over.  (I've adopted the theory that, if they don't like it, they can pick up a broom and start cleaning...)  I've learned that my kids can do so much more than I/they think they can.  I've learned that dinners don't have to be elaborate affairs, and the kids are perfectly happy with pancakes for dinner.  :)
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I have other topics I am going to post about, as I start to gain my strength (and brain power) back.  I want to talk about dignity, which is something that isn't always kept while you're going through a medical issue.  I want to talk about some issues that I've learned about that are often taboo and I've never heard others talk about.  (I promise, this topic will come with a warning, since it involves issues I don't want to talk about with people at work....LOL!)  I also want to talk about how my treatment and disease have affected my marriage.  I know I've talked with some of you about the difficulties Levi and I have faced, and I'll be honest with you all - I was ready to leave him.  Luckily, we both worked at it, have been seeing counselors, and I'm happy to say that we spent the past weekend together, in Sedona, and I fell back in love with my husband.  I am so grateful that he loves me enough to fight for our relationship.  

On that note, have a fabulous day.  More to come, I can assure you of that.  

Comments:

Congratulations from Madrid, Spain.
I am glad that you have finished this strong round of your treatment
I was impatiently waiting for your latest news and a little worried.
I wrote back in August and I told you that I am also a fighter against stage 4 colon cancer. Now things are not going very well but I can not give up, because I promised it my amazing three year-old son.
Your thoughts are very real and perfectly reflect the life we ​​have to live
Tomorrow I have another more surgery and besides I am on chemotherapy for long time
Best wishes
Juan Ignacio
April 30, 2013 at 10:55 AM
Blogger Carol Pack Urban said...

Awesome! I've continued to pray for you and your family. Such a wonderful photo of you, your son and the doctors and staff surrounding you as you rang that bell! I know they look forward to patients ending treatment and continuing on with their lives!!!
April 30, 2013 at 11:53 AM

Wednesday, April 17, 2013

APRIL 17, 2013


I know I've been slacking on updating here, but I just haven't had the energy.  Hopefully, I'll start to feel better soon, and be able to post pictures from the baseball game, family pictures, etc.  And, well, update everyone.

Today is my last day of radiation for this phase.  I get to ring the bell tonight (around 6pm-ish), and I'm super excited about it.  Yes, someone will be taking video, and I will do my best to post is ASAP.

I've been feeling a bit better lately - getting IV hydration daily has helped.  I'm definitely not 100%, but I'm able to function fairly normally until around 7pm.  Then, I crash.  And that's okay.

I spoke with Dr. Chong yesterday, and he's very pleased (almost surprised) that I'm doing as well as I am.  I keep saying that I think he and I define "very well" differently, but there you go.  I will have a couple/few weeks off of radiation and chemotherapy, and then I'll meet back with him to start making plans for the next phase of treatment.  He said that I should tolerate the next phase much better....thank goodness.

I'm off, but I will be updating more soon...  :)

Wednesday, April 10, 2013

APRIL 10, 2013


Well, the IV infusion of fluids each day seems to be helping.  I am so grateful for any improvement over last week, and these fluids (in combination with resting, eating better, acupuncture, and the new meds) seem to be helping.  I'm actually able to get up in the morning and not feel like walking to the couch is all I can handle.

I met with Dr. Chong yesterday for a weekly check-up, and in spite of the fact that I'm not doing well with this, he said that I'm doing, in his words, terrific.  That helped...more than I can tell you.  And, the light at the end of the tunnel?  Yeah, that bad boy is getting brighter and brighter.  Today is 6 days until I'm done.

Done is a relative term.  Dr. Chong and I talked about what's next, and he wants to proceed with the next phase of treatment, which will be a much more targeted radiation treatment (in conjunction with the Xeloda) to work on those lymph nodes in my upper left abdomen.  But, the good news is that I'll have a few weeks of break between this treatment and the next phase, and I should tolerate this next phase much better.  Because it's very targeted treatment, it won't be as difficult on the bowels, etc., which means the nausea and diarrhea should be much less.

I almost cried when he said that.

He also said that I should be able to work through the treatments, so I'm going to contact my boss and start the conversation.  Getting back to work and a more normal schedule that doesn't revolve around my toilet would be AMAZING!!

I asked Dr. Chong yesterday if I get to ring the end-of-treatment bell next week, and he seemed surprised.  "Of course you get to ring the bell..."

Oh, it's so on.  I am going to ring the HELL out of that bell.  There will be smiles and tears, laughter and crying.  That bell will mark the end of this phase.....one step at a time.  I will celebrate this next step, and I'll do it loud and proud.

Yes, there will be photos and (hopefully) video.

I cannot wait.  6 more days.  6 more days is all....I can do this. 

Comments:


AWESOME!
April 10, 2013 at 8:53 PM

Monday, April 8, 2013

APRIL 8, 2013


I can honestly say that this regiment of chemotherapy and radiation is the hardest treatment I've had to go through.  Last week was awful - just awful. The nausea kicked in and was the worst I think I've ever had.  The diarrhea was happening more often than I could tolerate.  The fatigue was so bad that I couldn't do the most basic of tasks, like showering and getting ready for the day, without taking multiple breaks.

My physical state was precarious.  My mental state was just awful.  It's really hard to try to keep a smile on your face when you feel like death warmed over.

I spoke with my care team on Wednesday, and they switched up my meds.  The steroids helped, but only marginally.  It basically took the edge off the nausea....which was welcome, but didn't help with my lack of desire to eat.

On Friday, I had my 2-week check-up with my med-onc team.  Unfortunately, I'm down 7 pounds in a two-week period.  For someone going through treatment, this is *bad news*.  If you loose too much weight, the meds that you're taking (including the chemotherapy), as well as your radiation levels, can become toxic.  In addition to that, because I'm having such severe GI issues, it appears that my body isn't absorbing much of what I am able to eat, which makes the nausea and fatigue that much worse.

So, I have a new anti-nausea medicine, which is actually an anti-psychotic that has shown to work really well on nausea.  It helped almost immediately (I felt a pretty significant difference on Saturday), so I'm happy about that.  Additionally, the care team thinks that I should start getting IV fluids daily.....this should help with my nausea, my fatigue, and my body's ability to absorb nutrients from what I'm able to eat.  I expect that I'll start this today, and if all it does is help me maintain where I'm at right now (and not continue the downward slide), I'll be happy.

Overall, the appointment with my care team on Friday went well.  Dr. K. said that he feels that I'm handling this all really well (which is the exact opposite of what I think).  He also said that he would be very surprised if Dr. Chong doesn't want me to go through the additional radiation treatments on the rogue lymph nodes.....I wasn't happy about this, but if it needs to happen to kick this cancer's ass, then so be it.  That treatment would be much more targeted, and should not be as difficult to tolerate.  I'm going to hold him to that expectation....  :)

This weekend was better.  Not great, since I still get so damned tired, but anything is better.  The fatigue is so frustrating.  I will wake up in the morning, thinking I'm doing okay.  But, getting my shower is like running a marathon.  I do it, and I'm wiped.

So, I'm learning the art of resting, of pacing myself, of not pushing beyond where I know I can perform.  I don't care for it, but there you go.

As always, my parents have been absolutely amazing in helping us out.  They have been willing to drop everything at a moment's notice, and I couldn't be more grateful to them.  They have been true angels.  Love you guys, Mom and Dad.  You mean the world to me!

I asked for help on facebook this week, and boy, did we get it.  Friends have come over to help with cleaning the house, my parents helped with all of our laundry (2 weeks worth...), cooking meals for us....it's been amazing.

If you are currently going through a difficult time in your life, please don't be afraid to ask for help.  People want to help you in some way - let them.  Oftentimes, when you're going through a really rough patch, people will say "Let me know if I can help."  95% of the time, they actually mean it.  My recommendation is to make a list of the things that you'd like help with - laundry, meals, cleaning the house, taking your kids for a few hours to allow for some uninterrupted sleep....there are plenty of things that people can, and will, help with.  Let them.  There is absolutely NO SHAME in asking for help.  As people have told me, it's a sign of strength.  Allowing others to help you takes some of the stress off of you and your immediate family, and oftentimes gives the person helping you a sense of fulfillment and happiness.

I'll end here, so as not to waste more energy than I can spare.  I will try to update more often, but honestly, there are days when I just don't have the strength.

8 more radiations.  Next Wednesday is my last one for this round, and then we will have a month (or so) break from both the radiation and chemotherapy.  I'm looking forward to getting my energy back, going back to work, and hopefully, getting back to living again!

Peace out, my army.  :)

Comments:

I think you're doing very well. It's an aggressive treatment and you're a very tough cookie. You will kick this thing!
April 8, 2013 at 10:52 AM

Tuesday, April 2, 2013

APRIL 2, 2013



This will be a quick update because, quite frankly, that's all I have the energy for.  This radiation/chemo treatment is wearing me down....I'm just so tired all the time.

Yesterday was treatment #13.  My last radiation treatment is 2 weeks from tomorrow.  Not that I'm counting or anything.....who am I kidding?  Of course I'm counting!

The full compliment of side effects has hit, including extreme fatigue, nausea, and diarrhea.  Most days, I require a nap to get through from mid-afternoon to evening.  It's just a fact that a nap helps me that day, and helps me to feel better the following day.

The family is feeling the effects of this treatment, as well.  My house is a disaster, I haven't cooked a meal in weeks, and it's everything I can do to run typical errands....what makes me sad is that it isn't leaving much room for anything else with the kids.

This sucks.  I can't wait until this is over, and I can start to recover.  I just hope we get a bit of a break before the next treatment starts, whatever that will be.

We started planning for Julia's 11th birthday party.  It's hard to imagine that my little girl is 11, but she's growing into such a fantastic person that I'm just ridiculously happy that I'm here to see it occur.  I've started writing letters to the kids, on days when the mood strikes.  I try not to be morbid or think negatively, but I feel better if I start to get things in order....I feel like, if I plan for it, it won't happen.

I'm off shortly to another round of chemo, a check-up with Dr. Chong, and my counseling appointment.  All crucial to my recovery, for sure.