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. :-)



The Details:
Sunday night:
Shot #2.  No problem! A little pinch, but my technique was off - didn't grab a big enough pinch (Didn't pinch enough fat...I don't know why...it's not like I'm lacking any...).

Monday: 
Wowee! I am EMOTIONAL! I was in the grocery store, pushing my cart down the aisles amongst the crowds, and tears started streaming down my cheeks.  I was thinking, "What if this doesn't work?  What if the virus never leaves?"  I pulled it together, checked out, and made it home. I told hubby what happened, and "my hero" was more than happy to say all the right things that made me feel better. It was a moment.  I'm over it now...  UNTIL, the Jamisons brought dinner for our family.  They committed themselves to bringing Monday night meals EVERY WEEK of my treatment!  What?  For us? Every week? Who does that?  I was so humbled and overwhelmed by such unsolicited generosity. They understand what we're embarking on, though.  They've been through long-term treatment in their home and know how difficult even cooking can be.  Still, I could hardly hold back the tears.  I somehow managed to wait til they left, hubby left the kitchen, and the kids scattered upstairs. Then I cried my heart out.  This is really happening?  I really need people to feed my family? Humbling, humbling, humbling.  Grateful, grateful, grateful.  Supported, supported, supported. Loved, loved, loved.  Wow.  God is Amazing!

Tuesday:
Allergies are kicking my butt - yeah for Zyrtec! I work out in the mornings but worn out by midday. Low grade fever slows me down a bit. I am grateful the Phillips family offered dinner this night.

Wednesday:
I was so happy this morning! Again, no flu symptoms from shot this week! Hallelujah! And my rash is drying up in places! Yeah baby! I'll keep using non-comedogenic and fragrance-free bath products. I worked out with daughter Alana this morning, and noticed my temp beginning to rise sooner than yesterday. So I ran errands and got home before noon. Time to eat and rest. Still not hungry but learning if I don't eat at noon, I feel it (nausea, sudden need to lie down...). I make and eat a smoothie in morning with 20g coconut oil to take 1st dose of Incivek. Glad I only have to take that drug for 12 weeks. The other two I continue. I have fever now at 2pm. Over 100. That's been typical all week. It'll fluctuate between 99.5-100.5+ until I go to bed. Makes a body weary!

Thursday:
I woke up with a low-grade fever. Boo. This is the first time I woke up with a fever. I was worried about how my day would go. I took Advil right right away and my fever broke. Yay! I spent time with my hubby this morning which was nice. Then I got tired fast and have been the most tired so far. Too tired to even reply to messages from my loving support system. Tiredness is expected. I did manage to make it to the lab for my weekly blood draw, and my nurse called back later with the results. As expected, my blood counts are dropping...

My low-grade fever never came back today though!  I wonder if I get low-grades just on the days I work out in the morning. I didn't workout this morning - no low-grade. I will workout tomorrow though (At least, that's what I say right now.). I love working out. And I hope I can keep it up. I'm curious to see if I'll get a low-grade fever tomorrow.

...The nurse said my white blood count is dropping pretty low. I can thank the Pegasys/interferon (weekly shot) for that. So they prescribed me Neupogen to increase my white blood count so that I can remain on my treatment. I'm waiting for it to come in the mail. Geez, I wonder what those side effects will be...

Ugh. I just looked at my notes. Neupogen is administered by injection. Another shot? Boo. Hiss.

I'm irritable.  Snapped at kids.  Great.  Can I blame the drugs?  That would probably be a cop-out.  I prefer to blame hormones instead.  Yep, it's probably a hormonal thing. Hormones may have played a factor during Monday's "emotional expressions," too.  I know some of you can relate...

Okie dokie.  I'm nauseous and short of breath sitting here at the computer typing.  I wouldn't be surprised if this blog is lacking in humor.  Oh well... Phone's ringing...

Mayo nurse just called back.  Nice lady.  She spoke to my PA and told me to keep my dosages the same. You see, depending on my blood counts, my treatments may increase or decrease.  My Mayo Clinic team is carefully monitoring me, making sure I stay safe while on these serious pharmaceuticals. I'm grateful for them.

Wanna hear something kinda gross? I was SO NOT HUNGRY for my 2:30 pm "feeding of the fat." So instead, I swallowed 1-1/2 tbsp of coconut oil.  Straight out of the jar.  No kidding! Gross, huh!? HAHAHAHAHAHAHA!!!   You didn't get - ahem - nauseous, did you?  Guess I was trying to drum up some sympathy.  (Kidding.) To be honest, I was a little concerned about throwing it up.  But, once I braved myself to do it, it wasn't half bad!  LOL!

Funny.  I got distracted by that phone call.  I forgot where I left off!  I'm told I'll be forgetting a lot while on treatment.  I see I was saying I was nauseous and short of breath.  I still am, and ready to sign off.  Nauseous... must be time to eat.  Checking time.  Yep, it's 6:00 pm.  Wish I had an appetite...

Many families have offered to help by way of bringing meals and helping with the children.  THANK YOU SO VERY MUCH!  As I said earlier, I am humbled and overwhelmed by all the generosity - totally unexpected.

I thank you for visiting my blog and I pray you are taking care of yourselves.

8 comments:

  1. Give your burdens to the Lord, and He will not permit the godly to slip and fall. Psalm 55:22

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  2. Shellie - I'm so sorry for everything you're going through! What a fighter you are! I wish there was something we could do for you - please know Desi is in good hands when she's at the studio. We all love her and your sweet family! And if you ever need her picked up or dropped off, please call me!

    Our family, too, has been on the receiving end of things and it is very humbling! While I protested a lot of the extra "help" others were offering my family, I was told to not let people miss out on the blessings they receive by serving us. It really opened my eyes.

    Please know we are thinking of you and that you and your family is in our prayers!

    Lainie

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    1. Hey Lainie! Isn't it nice to know we can relate to one another! It's wonderful to receive so much support! Thank you and I'm glad to know you!

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  3. you are doing great sista!! thanks for sharing your journey with us. so blessed to be a part of it and loving and know you - God Bless you ALWAYS!!

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    1. You've been a pillar for me to lean on. Thanks for being my sister in Christ!

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  4. Thank you so much for sharing your story and giving Sami the info for Mayo. Reading your blog today is giving me new strength and hope for dealing with my hemachromatosis. If you need anything, I am only a mile away, and my dad lives in Freestone park, I am there every Monday, so if you need an errand ran or anything, please let me know. I am praying for you!

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    1. Hi Laura! I am so glad you were encouraged by my blog! Thank you for caring, offering to help, and for praying! I'm not even sure we've met, but I feel your generosity and am taken aback! I hope you find the specialist you need! Please keep me posted on that.

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