Monday, December 31, 2012

40 weeks, 1 Day: Weakening...

Well, the celebration is over. 8 weeks and counting... woohoo ra ra ra... blah blah blah... Let's get this over with.

My body is speaking loud and clear: "I'm tired of this..."

I hadn't felt "weak" like this since the first twelve weeks. It really is like my body must know the end is near. And it's ready to be done with it all.

(I could probably quit now and no one would be the wiser...except me... I mean, what are the chances the virus will come back because I stop now versus in 2 months?)

Sunday, December 30, 2012

40 Weeks: 8 weeks left! Crazy

Yeah...so... I had my Mayo Clinic appointment and all is status quo. Nothing out of the ordinary as far as treatment goes. I've got the hang of this now.

Wow! 8 weeks left!!??!! WHAT?!?! :)

LOL! I remember the first 8 weeks. I remember counting UP because it was way too soon to count down. And I couldn't imagine what it would be like to be this far in treatment. Yet, here I am. So cool.

8 weeks and counting...

Monday, December 10, 2012

38 Weeks - How are you?

That's the question I get asked the most these days.  My answer?  "The same."  This response may sound stand off-ish, but it's actually quite accurate - and honest.

"The same" is not a bad thing.
So...what do I mean when I say it?

Friday, November 30, 2012

35 Weeks, 5 Days - Wow! 12 Weeks To Go?!?

I'm amazed I'm here!  Only 12 weeks to go?  Seriously?  I had no idea until the doctor told me at my Mayo Clinic appointment today.

I remember the first 12 weeks.  It felt like week 36 was an eternity away. Yet, here I am!

12 weeks to go.  Wow. Should I start the count down?  It's been a help to me NOT to count down.  That way, I don't get anxious for it to end.  I mean - why?

Thursday, November 8, 2012

32 Weeks, 5 Days - Blood sugar is low

Last week, I shared my blood sugar experience with my PA (physician's assistant) at my monthly Mayo Clinic checkup. Funny thing, she had ordered a glucose test as one of my labs.  I didn't know this. And she didn't know I was having those symptoms I shared in the previous post.

The test showed my blood sugar was low.  They administered the test again a week later - that would be today - and my blood sugar was normal again.

What had happened was...

Tuesday, October 23, 2012

30 Weeks, 3 Days - I Feel Like I'm Dying...

...no not really.  Well, yeah...really.  Sometimes.  This has been a new discovery.  By "This," I'm referring to the effects of low blood sugar.  At least, that's what I think it is.  However, I forgot to report this to my Physician's Assistant at Mayo Clinic earlier this month.  Oops.  Forgetting is a common occurance these days (Thank goodness for smart phones!  My virtual friend "Siri" really helps me record my appointments and reminders on my iPhone, and then the phone alerts me to them on the day, or whenever I leave or arrive somewhere.  Super cool tool.).

Yeah so...if I don't eat on the regular, and/or ignore my body's signals to feed it, then the body simply decides it'll just begin to shut down (Who told my body to do that?). It acts like it's using its "powersave" feature or something.  I guess this is to protect my battery, I mean my power source, I mean my body, so that it doesn't turn off all of a sudden.  ...I experienced this about 3 weeks ago while driving.  Yeah, kind of scary.  All my body kept telling me was to stop everything and go to sleep.  But I'm driving!!  Luckily, my brain knew I needed fuel and I just needed to park my car so I can pull out my chicken salad and eat.  Just pull in and park the car, Shellie.  You can do it.  You can make it.  ...I made it.  (Thank You God for Your patience and grace towards this "hard head" of Yours.)  Eating those first few bites of that chicken salad was like someone doing CPR on me.  I felt like I was being revived - brought back to life.  That's how it feels, for real...

It happened again when picking up my kids from the airport the other day.  And it happened yesterday and this morning too.  ... Do I detect a pattern here?...   Forgive me.  Like I said, my brain processes things a lot slower nowadays.  It's working, but it just takes a little longer to pull things together and spit it out. But I just ate a couple of hours ago!?! 

For some reason, my body cannot cope without enough glucose.  Duh.  Neither does it have time or energy to give a warning when my blood sugar levels are low. (Or maybe I'm just not aware of the early warning signs yet).  If I need to eat or rest, and I don't when I first feel the need to, it's already too late.  No grace period.  Eat or die.  That's how it feels.  Different?  Weird?  Alarming?  Yep.

I hope this "low-blood-sugar-self-diagnosis" experience is just the chemo talking and nothing new going on for real...

Right now as I type, I feel woozy.  My finger tips are slightly numb - my tongue too.  And I feel exhausted. (It's only 12:25 pm).  I better stop and lie down.  No not that.  Not yet. That's what I want to do.  But I need to eat first.  If I don't eat before I lie down, I may never get up.  I may die there. That's how it feels.  I better eat first.  Ok. Stop typing and eat, Shellie.  Ok... Bye...

30 Weeks, 3 Days - 2 Weeks of NO Extra Shots!

This is a short post.  I'm just excited to report that - for the first time since I started Neupogen and Procrit injections - I hadn't needed a shot in two weeks!  That's a cool victory for me.  Even my nurse was proud! Does this effect how I'm feeling?  Uh, well... no.

So not to confuse anyone, I still take the weekly Pegasus shots, because that's the chemo.  And I'm still taking the oral Ribavirin too.  None of that is gong to change.  I've had weeks were I've reduced the amount I inject or swallow, but not lately!  I suppose my body is doing all right for now.  I'll take "all right."  But that doesn't change the fact that I am super-dee-duper-dee tired.  My brain is running on a processor slowed down by drugs, you see. But - hey - it's still running. So, I still press on.

Holla!

Saturday, October 6, 2012

SIDE EFFECTS - at 28 weeks

WARNING: Casual readers of this blog may find some details uncomfortable. I've included them to help fellow patients or those researching the idea of undergoing treatment. I apologize for any discomfort this may cause.

28 Weeks, 0 Days - Limitations & "Training Wheels"

Wow!  28 weeks!  I remember when I first started treatment and another patient shared that she was 28 weeks in.  I couldn't imagine it then.  And here I am now!

I'm doing well.  I'm still an "undie."
I have 20 weeks to go.  And I'm gonna be just fine...
Whoop whoop!

Many patients get to this point and - having had such a difficult time - decide to call it quits.  In doing so, their risk of relapse is 25% (if I remember correctly).  My life isn't a breeze, but I know I'll make it.  I know I will.  That's a great feeling. You know, having confident hope - unwavering faith.  I can't say that my track record is stellar in this area.  No, not at all...  I've grown to develop this depth of faith.  And this treatment is included in the credits.

Sunday, September 9, 2012

24 Weeks - Half Way!

Yeah! I'm half way! 24 down, 24 to go.

Man, this is a long haul. I feel this way especially on days like today. And I've had days like today more times than not.

Thursday, August 30, 2012

22 Weeks, 5 Days: My Liver Compensates Well...

My nurse said something interesting at the 20-week check up. She said, "Your liver compensates very well [to the virus and now this long-term treatment]." Really? Wow. That says a lot about my body and my personality. Often times while growing up, my parents took pride in sharing how "adaptable" I was. I suppose I "adapted" well to the leukemia treatment 25 years ago. I "adapted" to living with Hep C. Even my liver knows how to fall in line: "Your liver compensates very well..." Too funny. Or is it??...

Wednesday, August 29, 2012

22 Weeks, 4 Days: A Foreign Habit...

It's been a while since I posted. I hadn't forgotten about y'all... Thanks for your patience!

I'm almost halfway through treatment! Yeah! AND... I'm pretty worn out this week. I've been running on low since school started, really.

Wednesday, August 8, 2012

19 Weeks, 4 Days - I don't appear wiped out, but I feel it.

I enjoy the freedom of summer vacation! I love spending time with the kids without stressing over bedtime, getting ready for school, getting to school on time, homework, projects, violin, clean clothes, lunches made, tests, social drama, etc.

Today, the kids went back to school.

And, I prepared myself for this day - and the kids too. I really did! So I thought... One kid decided she didn't like the outfit she set out the night before so she had to pass on breakfast in order to get to the bus on time, another kid "forgot" to groom, and still another decided to play hide and seek.

I stressed...Darn it!... I tried not to. I really did.

Sunday, July 29, 2012

SIDE EFFECTS - at 18 Weeks

WARNING: Casual readers of this blog may find some details uncomfortable. I've included them to help fellow patients or those researching the idea of undergoing treatment. I apologize for any discomfort this may cause.

18 Weeks, 0 Days - Maybe It Was the Neupogen

You know, I feel better today. Yesterday too. And the day before. Maybe the renaissance isn't over yet after all?

Friday, July 27, 2012

17 Weeks, 6 Days - Renaissance Is Over

It's been a great few weeks of activity and productivity! Almost felt like - a rebirth.  A renaissance, if you will... But today, this week, my limitations have reappeared. It sucks.

Friday, July 13, 2012

15 weeks, 6 Days - What A Relief!

  • Feeling better!
    Oh my goodness!  Who knew being off one drug would make such a huge difference!  I do remember the doctor and nurse telling me that telaprevir is a very harsh drug.  Wow.  I really didn't "get" the impact of that statement until I got off of it.  What a difference a pill makes!

  • When I rest, I'm more rested!
    This is definitely a relief.  During weeks 6-12, especially, rest did not equal relaxation. 

Saturday, June 30, 2012

13 Weeks, 7 days - Life as a "Mom" Patient

...Notice, I didn't say Life as a "Patient" Mom for the title of this post. Although, I've improved in that department. (It's definitely a weakness of mine.)

Wednesday, June 27, 2012

13 weeks 4 days - 10 Days without telaprevir/Incivek

It's been almost 2 weeks since my last Incivek/telaprevir dose.  Here is a recap of the first 10 days:

Saturday, June 16, 2012

Friday, June 15, 2012

11 Weeks, 6 Days: No More Telaprevir! (Almost)

I'll be done with this potent telaprevir/Incevik drug at 12 weeks!! 

Yeah! I have to admit I will miss this drug - NOT one bit! ...2 pills per dose, 3 doses per day, every 7-9 hours after eating 20 grams of fat, for 86 consecutive days.  People: that's 258 doses and 5,160 grams of fat in 3 months.  Uh. No. I won't miss this - not one bit.

Thursday, May 31, 2012

SIDE EFFECTS: at 9 Weeks

WARNING: Casual readers of this blog may find some details uncomfortable. I've included them to help fellow patients or those researching the idea of undergoing treatment. I apologize for any discomfort this may cause.



In no particular order:
  • Fatigue
    This is the norm now. I've learned to do less and be happy with the little things, like fixing breakfast for the family or going to the grocery store.  Those are big feats now and I am appreciative when I can accomplish them!  I move much slower these days and don't pressure myself about it. It is what it is.
  • Shortness of breath I often have to stop and catch my breath, especially if I'm walking and talking at the same time (which doesn't happen much these days).  I sit as soon as I stop moving, lean on walls if I'm standing, or prop my legs up if lounging for a time.  This is especially true if I'm talking.
  • NauseaPretty non-existent nowadays.  I suppose I'm getting used to it all.
  • Lack of appetiteI can eat ok but can be picky.  That's not like me. 
  • Rash and pruritus (itching) - NEW CHANGE
    No apparent rashes. HOWEVER, my skin feels like porcupine needles are constantly sticking me.  Ugh!  So itchy-burning annoying!  Once you start scratching, it itches everywhere! This was especially the case last night - made it hard to sleep. Only 3 more weeks left of Incivek so hopefully these symptoms will then disappear all together.  Until then, I will continue to use non-comedogenic, fragrance-free shower gel and lotion.
  • That other minor skin irritation
    You know, the one I said is located under the behind... Even less of an issue than before. I use medicated wipes and occasionally Preparation H for relief.
  • Emotional irritability/sensitivity
    I'm much more in control of this now.  Thank God! When I sense it coming on it's essential I find a quiet place to sleep more.  I also communicate this to my spouse and, simply, do less.
  • Sensitivity to acute loud sounds and bright light
    This fluctuates but is very present.  I wear sunglasses indoors where the light is bright on a regular basis.  Car alarms are very irritating.  So are loud squeals.  As a mom, I'd learned to tune them out over the years, but I'm not able to manage that nowadays.
  • Low Grade Fever and headaches
    It's NOT an every day thing. Yeah! But I'm better at sensing when it's bout to come on. When I take Ibuprofen and/or Theraflu it helps so much!  Taking Theraflu at night has helped me sleep better too.
  • Hair thinning
    This has slowed down a bit, perhaps because I'm not treating my hair while on treatment.  It still falls out but my new growth gives it body (since it's afro-ish...).
  • Muscle weakness AND soreness (NEW)
    I feel my muscles getting tired just from walking up the stairs sometimes. My muscles have also felt sore, as if I had been working out or something.  (Yet I'm not working out at all these days.  It's bummer.)
  • Neupogen AND Procrit (NEW)
    Both are injections to help my bone marrow produce more white and red blood cells, respectively. They typically wear me out! My body runs really hot while on these drugs, I feel more fatigue and weak.
  • Female issues
    Early/Late, inconsistent/extended cycle with cramps and body aches. I usually have regular and predictable ones.
  • NEW: Forgetting
    This is a funny one.  My mind does not work like it used to.  It's has a slower processor and limited memory.  In conversation, I forget what I was talking about after the slightest interruption. Sometimes I forget even while not interrupted.  It's difficult forming sentences because my vocabulary seems to be limited too.  Sometimes I can't find the right word to say.  I'm usually a LOT sharper than this, so this is new for me.  I find it quite comical though.  If you ask me to remember to remind you to do something, you better make sure I enter it in my phone WITH an alarm, or I will likely forget.  Oh well. So far, I hadn't inadvertantly shop-lifted or burned anything down, so...

Monday, May 21, 2012

NEWS FLASH: I'm an "UNDIE!!!!!"

I received great news this morning!  I'm an "UNDIE!!"  Yahoo!
My test results showed that the virus was undetectable, hence the endearing name, "undie."

What does this mean in terms of treatment duration?  Nothing.
My treatment duration remains the same at 48 weeks. I have 40 more to go.

Being an undie at 8 weeks is exciting though!  You see, the sooner I'm an undie, and the longer I remain an undie on treatment, the greater the chance the virus will not return post treatment.

Every 4 weeks I'll be checked for "undie" status.  Every 4 weeks I hope to remain an "undie."  If the virus returns on-treatment, that could spell trouble.  We don't expect that to be the case.

To hear how I've been doing, read the previous post.

Thanks for the gift of your time, allowing me to share my journey with you is a blessing!

Thursday, May 17, 2012

7 weeks, 5 Days - Test Time...Too Much of A Good Thing

Today I went in for the second "UNDIE" test.  Will the virus be undetectable this time?  I sure hope so!  The sooner I'm an "undie"  the lower the chance of a relapse once treatment stops.  We never want to see this virus again!

I should hear the viral load results sometime on Monday.  The goal: undetectable!  Last month my viral load dropped from 5.5 million to less than 43.  AMAZING!  That means these powerful pharmaceuticals are doing their job.  Hopefully it will be even better news this time!  I'll definitely keep you posted.

I did receive the basic test results back for my complete blood count (CBC).  The results: TOO MUCH OF A GOOD THING...

Monday, May 14, 2012

7 weeks, 2 days - I Thought I Was Getting Used to It...

For the past couple of weeks I had been feeling great!  My head was clear. No fog or heaviness. And I had extra energy!  I was exercising at a decent intensity, I was pretty clear in the head, I was moving around quickly, light-footed, hopping up the stairs, being silly with the kids, less napping, more chatting, and spending more quality time with my hubby...

It was the closest I had felt to normal since the first week of treatment.  It was AWESOME!  My blood counts were looking decent too.  So decent that my docs increased my meds (the Pegasus, specifically)!  This is good news because the more chemo my body can handle now, the increased likelihood that the virus will not return once the treatment ends.

I was getting used to it all.  I really was.  So I thought.
Until now...

Monday, April 30, 2012

5 Weeks, 2 Days - Today Was A Good Day!

The Short Summary:
Tuesday to Monday: More in tune with my emotions. Sensitivity to light and sound still exists but not as difficult to tolerate as last week. Low grade fever (LGF) was only sporadic and not persistent (yeah!). Shortness of breath, head congestion are expected now.  I'm getting used to it. Tense muscles and soreness (due to the Neupogen, I think.). Tired x5. Getting used to that too.  Eyes are still heavy. I'm getting used to the frequent yawning. The days following the shot(s) are tougher than later in the week. Still taking Theraflu and ibuprofen occasionally during the day or night as needed.  No rash this week! My skin is sensitive so I keep it lotioned up and try to stay hydrated. My hair is thinning significantly.  I'm glad I had thick hair.  The light shines straight through now.  This is the first time I've thought about a hair piece.  I don't need it now but - hey - I got 43 weeks left! And it ain't gonna stop thinning!

Monday, April 23, 2012

"Almost" Is Not Enough

Aw man!  I'm not one yet... No "undie" this month.  I'm not undetectable. But almost...

4 Weeks, 2 Days - My body says, "WHOA!"

The Short Summary:
Tuesday to Monday: Decreasing energy. Increasing headaches, sensory sensitivity. I wear sunglasses indoors. There were days I was glad I didn't have to cook a meal or drive. I just didn't have the strength to do it. Persistent low grade fever (LGF), shortness of breath, head congestion. Tense muscles and soreness (without the workout!). Tired, tired, tired, tired...tired.  Some people notice I'm exhausted, most don't have a clue. Eyes are still heavy. I start yawning around 10am (up between 6-7am getting kids ready for school). Don't mind the days I don't work out (not normal!). The days following the shot(s) are tougher than later in the week. Neupogen is necessary but completely makes me weak. Taking Theraflu and ibuprofen at night to help me relax and sleep. Some recurrence of mild rash in same places. Good news: irregular, sudden spurts in heart rate are declining in frequency, AND my viral count is less than 43!

Friday, April 20, 2012

I Gotta 50/50 Chance

My testing and physical today went well. But, I don't have the viral count yet. Boo. I'll know if I'm an "Undie" on Monday. Monday?  Not today? Nope... It takes at least a day to get the results for HCV (Hepatitis C) viral copies.

Grr...They didn't tell me that. They should have told me that before now. I was expecting to know today. They should have told me that. Don't you think that's some information I'd like to know? Boo hiss...

Sunday, April 15, 2012

PRAYERS before the "UNDIE" Test

Would you pray for me please?

On Friday, April 20, I will have nearly completed 4 weeks of treatment. On that day, I am scheduled for a physical with complete blood work at Mayo Clinic.  This is to check to see where my viral load is. If my viral load has decreased, that means the treatment is working.  If I recall correctly, my viral load is around 8 million copies.  We prefer it to be zero!  The test can't guarantee that but it can come back as undetectable!  When Hep C patients reach this status, they fondly call themselves: undies!  I hope to call myself "an undie" very soon!

SIDE EFFECTS: at 3 Weeks

WARNING: Casual readers of this blog may find some details uncomfortable.  I've included them to help fellow patients or those researching the idea of undergoing treatment.  I apologize for any discomfort this may cause.

Thursday, April 12, 2012

2 Weeks, 5 Days - I Get SO EMOTIONAL, Baby!

The Short Summary:
Saturday to Thursday: MAYDAY! MAYDAY! Serious emotional distress happening here! Persistent low grade fever (LGF), shortness of breath, head congestion. Sen-si-tive!  Irregular, sudden spurts in heart rate. Minor achy bones. Tense muscles. Tired, tired, tired...tired.  Now people say I look exhausted. Eyes are heavy. I start yawning around 10am. Working out now means walking at low intensity. The days following the shot(s) are tougher than later in the week. Taking Theraflu, Zyrtec, and ibuprofen for relief. Good news: Rash is drying up!!

Thursday, April 5, 2012

1 Week, 5 Days - Oh Yeah, I'm Feelin' It!

The Short Summary:
Sunday to Thursday: persistent low grade fever, shortness of breath, irritability, absolutely no appetite, no new rashes, itching is diminishing, tired, tired, tired, BUT still able to workout at same intensity. :-)

Sunday, April 1, 2012

SIDE EFFECTS: at 1 Week

I thought I'd add a regular posting that lists and describes the side effects I've experienced or am currently experiencing at a given time in Hep C treatment.

In no particular order:

Saturday, March 31, 2012

0 Weeks, Day 7: Nothing to Write Home About

Well, the flu passed through our household this week, but it didn't come through me!  My daughter Desiree caught the bug as it made its way through the fifth grade.  As for me -  nada.  No flu symptoms.  Yeah!  I'm glad.  It was difficult not to anticipate its onset, though. And funny thing (or not), I secretly questioned if I was given a placebo by accident or something!  I know, kinda crazy...I guess I was expecting the side effects to be some kind of proof that my body was responding to the medication.

Sunday, March 25, 2012

0 Weeks of Treatment: The Starting Line


It's Sunday morning. Day 1 of this 24-48 week journey. And I'm anxious, excited, uncertain, relieved, nervous, glad it's here, etc...! Doctor said treatment will likely take 36-48 weeks, based on my initial blood work. It's a lifestyle changer. Needless to say, this newly turned 37-year-old has been anxious for weeks. I am just glad to get this party started! With supportive friends and family, and a husband and 3 kids in the know, here I go!