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Friday, August 12, 2011

My Rough Days

Throughout most of this blog I've tried to write lightheartedly with humor and still get information out. Sometimes this is easy and sometimes not. A couple days after my treatments, I try not to write at all because those are my "rough days". I've decided to make an exception with this last AC treatment. It's only fair that if I'm going to write about my experience, I need to write about all of it, not just the parts that I can crack wise about.

So yes, this will probably be a downer to read, but it's important all the same.

I usually feel ok on Monday, after treatment, and for most of Tuesday. I'm trying a new anti-nausea patch*** because my doctor was concerned with how long I stayed sick after my last treatment. It takes a couple of days to kick in so I put it on Tuesday morning. My Aunt Kathy is here to help me with the kiddos and the house stuff. My pop had a trip this time around. She leaves Tuesday afternoon because I would rather spend my rough days alone than have anyone there to watch me be sick. By Tuesday evening, I begin to feel like I had a meal that was a little too spicy. That's when I know to stay on the ball with my medicine.

When I wake up Wednesday morning, I take it slow. My mouth tastes like ashes, even though I haven't had a cigarette in over 15 years. My bones hurt deep down from the Neulasta shot I had the day before. The glands in my neck are rock hard and ache. It's hard to swallow. My stomach is sour.

I have to get up and get moving. My friends are coming to take the kids for the day so that I can recover. I still have to get them up, dressed & fed before they get here though. My kiddos know the drill by now. They don't fuss or have a fit anymore. They don't argue with what I've picked for their breakfast or complain about how slow I move to get it to them. I let them pick their own clothes. We make sure to indulge with hugs, kisses, and very gentle cuddles before they leave. I miss my babies, but I don't want them to see me in pain like this. I want them to remember having fun during their summer. I thank the Goddess every day that I have friends kind enough to take them on these days.

I take my first medicine cocktail of the day: Claritin. Vicodin for the pain. Tagamet, Zoloft, & Tigan for nausea. Ativan for my nerves. Valtrex & L-lysine, because chemo can cause extreme cold sore flare-ups. A stool softener, because so many of these pills cause constipation. I have to take some mixture of these pills four times a day, everyday, but on Wednesday & Thursday is when I have to lay it on thick.

I take my morning pills with milk, usually whatever is left from my cereal. My beverage choices have narrowed considerably. My stomach is extremely sensitive. Coffee has been off the menu for more than a month now. I miss it, but I know I'll get to have it again when this is all over. Juice is pretty much a no go because of acid content. Drinking pop of any kind burns. I pretty much just drink milk & water now though. I'll add some chocolate or strawberry flavor to my milk or a little smidge of koolaid to the water to change the flavor once in a while. I know I'll probably get another kidney stone down the road from the amount of milk I've been drinking, but for now it's a great buffer. I can eat more things because I'm drinking it. Sometimes I can manage iced tea too. The cold feels good. I make sure to drink a lot during the day to keep hydrated.

Now that the kids are off, my tummy has something in it, pills are taken.... I can try to relax. The vicodin helps twofold. It not only dulls my bone pain. It helps me sleep and the more of the day I can sleep away, the faster this rough patch seems to go by.

I wake up to take my lunchtime pills and get some food on my stomach, even if I'm not hungry. Some of the pills I take can cause ulcers if I don't eat. I make sure that I eat something soft, in case I have to lose it quickly. I have to consider that for all of my meals right now. I spend a little bit of time online, usually on Facebook, saying hello, thanking people for their kind thoughts (I really do take all of them to heart!), seeing what the world is up to before I get sleepy again.

About the time I wake up, Aaron is getting home with the kids. He makes us some dinner, omelettes for him & the kids this time, plain scrambled eggs & toast for me. This is the hard part for me, emotionally. I know that Aaron is so tired after working all day and I feel horrible that I can't help. The logical part of me knows that he doesn't resent me for this, that neither of us have any control over this part of my treatment. I know that it's not forever. That doesn't stop me from feeling useless though.

We spend a couple of hours watching tv together, cuddling as a family. I give the kids goodnight hugs & kisses in the living room because I can't go upstairs. I get dizzy & nauseous. Aaron makes sure they get to bed then he falls asleep in his chair. He's had a long day. I stay up long enough to get my last round of meds in, then get us both to bed.

I end up waking up every other hour to use the bathroom because of all the fluids I drank over the course of the day. This is good because it's flushing the poison out, but I'm so tired!

We do it all over again the next morning.

I'm glad that the kids are excited to go see their friends. It's easier than arguing with them, Connor especially. He's still having a hard time with this sometimes and doesn't like to leave me. He's making it easy on me today though. :-)

I stick with my routine.... Eat, drink, take meds, sleep, do it again times three. I actually ate a whole potato with sour cream & bacon bits for dinner tonight! It's a little early to say for sure, but I think the patch is doing it's thing! Hopefully, it'll be all uphill from here. But now we have to prep for the next set of chemo meds. The doc said the Taxol should be easier than the AC treatments, but everyone is different.

My fingers are crossed and I'm hopeful.


(Many, many thanks to my Aunt Kathy, the Cox Family, & the Markel Family for their help this week! And also to all of the other families who have helped and are helping us through this! You have all been such a blessing to our family. There just are not enough words or ways to repay in kind.... With much love in my heart -Nik)

*** The Sancuso patch is what was prescribed. You can read up on it here: http://www.drugs.com/sancuso.html

6 comments:

denedlv said...

Nikki, I found your blog a statement of courage, not a "downer". It would be unrealistic to be "up" all of the time. Acknowledging side effects of the chemo in your blog will help others understand and should do you good as well. I have a friend in Long Island, NY who just did her last chemo 3 weeks ago and just had her PET scan and got a thumbs up from her oncologist.....everything looks good! She, too, experienced the nausea and tiredness, the "bad days" that followed treatment, then the lessening of symptoms just in time for the next treatment. Hers were not quite as severe as yours, due to different chemicals and type of cancer, I am sure, but emotionally the reactions are the same.
I applaud you both, and others going through this, on your courage, your strength and your perseverance. With all of that you are still aware and considerate of Aaron and your children and what they are feeling physically and emotionally. You, Aaron and the children and your relatives and friends epitomize the meaning of "family". More power to you!!!
Denise

Anonymous said...

Stay strong, keep fighting and most of all, know that you have friends everywhere praying and sending waves of good energy your way. Hugs from Dominique R in Canada

Tumblytumbleweed said...

YOU ARE MY INSPIRATION LADY~ You have been an amazing friend thru facebook.. wish we could meet in person one day. I am living each word with you and respect and appreciate your blogs and wish I was there to "help" you in "SOME" way or another, as you have helped me. Always thinking of you and prayers for you whenever I can.. *hugs hugs & more gentle hugs* tumbly <3

Hot Soup said...

This is rough to a degree I can't fathom. All I can say is my hopes and prayers and other good thoughts are with you and your family.

Georgia said...

Dear Nikki....I am the woman who Denise is talking about. When I was diagnosed in March, of course I was devastated but swore that this dreaded disease was NOT going to win. I tried, and for the most part, kept a positive attitude but there were timeS that I just cried when I was alone.
I truly feel for you because I have had many of the same symptoms, especially after the treatments. I always felt like I was hit by a Mack truck and couldn't get out of bed for 3 days. The mouth sores, terrible. Just when I started to feel pretty good it was time for another treatment. My last round of chemo caused me a lot of nauseousness. I also experienced a lot of tightness in my chest and throat which brought me to a halt on walking my dog or doing much of anything. I'm so glad that I have a loving, caring family. I am a widow with a grown daughter, whom I don't know what I would do without! I have also, and still do, pray a lot and my family and wonderful friends have done so also. The power of prayer is very strong.
Please keep that positive attitude and you will be and are in my thoughts and prayers....WE WILL SURVIVE!!!!
Georgia

Anonymous said...

Dearest Nikki,

You are an inspiration to any and all who know you. I am only a phone call away to head your way or listen if you want to vent. Lots and lots of love to you and yours.

Aunt Kathy

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