Jan 302015
Young women at work overwhelmed

Young woman at work

Ahhh, it is good to be back to work.  I am not able to maintain my regular schedule yet, but just to go to work, accomplish something, see my coworkers, and, last but not least, earn my paycheck, feels really good.   Of course, by this summer I may have a desk like the gal on the left, but right now it is looking good.  A great chance to develop some new habits that will help me stay on top of things at work.Work this Wednesday-Friday has been in the emergency facility in Newton for my co-workers and I.   We have been treated pretty well with blue jean days, snacks, cold drinks on tap and a pizza lunch yesterday.  Today some of us will be going to a local restaurant for lunch.   Does this sound like hard work yet 🙂

I go back for chemo number 3 on Monday and I am hoping that it doesn’t drag down my ability to work too much.  It really feels good to be back on the job.

Jan 202015
3 blue work binders piled on each other and locked together with lock

Work binders

Work.  Yup, I go back to work tomorrow.  I am very excited to see my coworkers again!  I work with a great bunch of people and I miss them.  I imagine they are looking forward to seeing me come back too so I can work my desk 🙂  I am feeling a little bit nervous.   I am having some side effects from the chemo including occasional vision disturbances and dizziness.   This mostly happens when I stand up from a sitting or lying position.  My plan is to try to work the whole day, but to be aware of how I am feeling and leave early if I have too.  I have quite a bit more energy than I have had for a long time, but I am still lacking in stamina.  I took a mile hike on hilly, snowy ground and that was enough to wear me out.  It is time to get moving and start building my strength up again.  It will be nice to have the social contact at work, even if they do actually expect me to some work *sigh* while I am there.   So mean…

Round 2 went a bit better than round 1.  They changed my “push” to a slower rate on that last medicine and I didn’t have the hot flashes and very sick feeling that I had last time.  I guess chemo is pretty much a find your way as you go process.   They start you out with the max doses, but there is a lot of room to reduce the medication and still get the same results.  So, by the time this is over, they should have the perfect mix figured out for me.   That doesn’t mean I’m going back for extra treatments, though :-}

Two down, six to go.  I got this thing!  “I am more than a conqueror.”  paraphrase of Romans 8:37

Ostomy oopses: For ostomates only.

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Jan 142015
Ostomy oops

Ostomy oops

Ostomy oopses-yuk!  Why for ostomates only?  If you don’t need this information, you may want to skip over this blog because it is on the TMI side and a bit gross.  When a ostomy has an oops, it isn’t pretty!  I wasn’t sure about posting it, but a quick Google search showed I am not the only one experiencing issues, so I decided to go ahead and share in hopes of helping someone or getting some tips myself.

I remember when the ileostomy surgery was explained to me.   I was told I was would have an ostomy bag.  I would just have to attach it, clip it properly, and all would be well.   You know, I could jump in the swimming pool, go rock climbing, ride my horse off into the sunset.  Since the surgery was a life-saving one for me, I accepted this pretty readily.  Maybe I missed it, but I don’t remember any discussion of the things that can go wrong.  It didn’t seem like any big deal.   It didn’t even sound like it would change my lifestyle, except for a few minutes here and there for care.

I read somewhere that if your ostomy bag is properly “attached” and clipped no odor or “output,” as my medical care providers so delicately refer to the bag contents would leak.   In reality, I am sure that becomes true for long-term ostomates as they learn the little tricks that help keep things in order.  But, in the meantime, that quick Google search shows there are a lot of us that struggle, at least at first.

In this post, I plan to share a bit about what I have tried, what I plan to try, and what I have found on the net.  The products I have used can all be found on Amazon and linked to from this page. I hope it helps somebody, and if you have tips of your own to share, I hope that you will share them below.

First, the obvious:  Pay attention.  Watch out for conditions that may cause problems and try to figure what caused any leak you experience so you can correct the situation.  I monitor my bag and dressing often.  I check to be sure the seal is firm and there are no signs of leakage.   I double-check my clip and I am careful not to disturb it when I change positions since I had it slide open on me once.  My supplies say to change the bag every 3 to 5 days.  I noticed I rarely have problems on days 1 and 2, they usually start on day 3.   So, I plan to change every other day.   Just simple things like that.

Talk to your physician, surgeon, wound nurse, somebody that knows about this stuff and works with it all the time.  I was having trouble with output that was so watery it was going right through the clip.  When I had surgery, the surgeon said to use Metamucil to thicken the output and Imodium to get less output.  The Metamucil was not working.  He said to try the Imodium and that helped a lot.  Such a simple solution!  I was very glad that I asked.

I also have trouble with “blow-outs” along the side of the flange.  I don’t recall this ever happening to me on day 1 or day 2.  Perhaps there is something different about my skin and the adhesive just doesn’t hold quite as long as expected?  I’m not sure, but will continue to change on day 2 from now on.  This usually happens when something crimps the bag and the output can’t flow down to the bottom.   It’s helpful to watch your sitting position and make sure that your clothes aren’t too tight over the stoma.  I think the latest may have been caused by my seat belt resting below the stoma, so I will watch that next time I drive.

I have ordered this ostomy pouch cover. I am hoping that it will make the pouch a little more comfortable to wear, help absorb any little bit of moisture left after bathing and drying, and muffle some of my intestinal noises. I’ll update this post and let you know how I like it.

I definitely felt that there was an odor to my ostomy bag, especially after the first day of use. I use deodorant drops and I really like this product. It takes care of any smell and is easy to use. One somewhat silly thing, it has a cap that has a nozzle to squirt the deodorant into the bag, but the recommended “dose” is one cap full. Kind of hard to measure while the cap is still on the bottle.

I was using the cheapest one piece ostomy bag that I could find. Since I have had some issues and I wanted to try a pre-cut version, I am trying a different one.  Once again, I ‘ll swing back and let you know how it works out.

UPDATE:   I am very happy with this product.  It has a wider “tail” for emptying.  It is much easier to clean after emptying due to the design of the pouch and tail.   The tail folds over twice and is fastened with Velcro.  You can then tuck it up into a pocket if you like.  I really don’t miss a clip banging against my leg and I felt really strange stuffing that thing down my pants leg!  Due to the design of the closure, it is not possible to have the leaking problem I had with the cheaper bag.   This system also does a better job containing the odor.  Not quite perfect, but much better.  The adhesive system seems stronger, it is reinforced with a plastic ring.  The stoma hole is a perfect fit at 1″- no more cutting!  I am happy, happy, happy, that I made the change!  It is worth the extra money for the increased comfort and confidence.

Here are some other websites that you may find helpful:

I like that this one is for nurses, always good to have a medical point of view.   Check this article if you are having severe issues:   http://allnurses.com/wound-ostomy-continence/leaking-ileostomy-any-145898.html

This one is full of great tips:  http://www.ostomyguide.com/managing-ostomy-accidents-leaks-sleeping-odors-blowouts/

A personal story of how one ostomate solved her leakage problem: http://ostomyoutdoors.com/2012/10/30/ring-around-the-stoma-my-best-defense-against-leaks/

Disclaimer 1:  I am not a medical professional.   You should always follow the advice of your medical professional regarding any medical condition.

Disclaimer 2:  This page contains affiliate product links.

Jan 062015
Tired woman drinking coffee

Chemotherapy makes me tired!

Chemotherapy round 1 is now complete-only 7  more to go!  I am so lucky, I think the most common treatment for people with this condition is 12 rounds.   I am hoping to miss the worst of the side effects given since they are cumulative and I have fewer rounds scheduled.

My chemotherapy takes place locally in the Grinnell Regional Medical Center.  I have been working with Alisha.  She is a blessing-very nice with a soothing personality, professional, organized, and unruffled no matter how busy she gets.

My chemotherapy sessions will be two weeks apart and I will finish in April.  I go in in the morning for labs, visit with my doctor and then return to the Chemotherapy Suite.  It is a really pleasant place.   There are cubbies for your outdoor items, reading material, and reclining heated chairs (ah!)  I have pre-meds to help with the nausea that can be a side-effect of chemotherapy, then the chemotherapy drugs.  After those drugs are infused, I get a “push” of another drug and I am sent home with a pump to infuse that last drug into my system for 46 hours.   It takes about 3 hours on Monday and I go back on Wednesday to have the pump removed.

That’s how it goes in theory, anyway.   The pump did not work so well this week.  My port (what’s that?) is deeper than most, possibly due to inflammation at the site.  The needle worked loose and they will need to order longer needles to effectively utilize my port.

Yesterday I was pretty tired from the chemo.  I am feeling a bit better today, but still not at 100%.  I hate to wish my life away, but I am really looking forward to finishing the chemotherapy treatments.

Jan 052015
Be thankful

Be thankful

And let the peace of Christ rule in your hearts, to which indeed you were called in one body. And be thankful.
Colossians 3:15 ESV

Sure, it has been a struggle dealing with cancer, but there is still much in my life that is good. I promised myself when this journey started that I would remain more than a cancer patient, more than a cancer survivor. I am still a whole, complete person. I have moments when I forget that – lots of them – and I think that’s when I most need to remember the many blessings I have in life and be thankful. Sometimes it’s not easy, but it always leads back to the peace of Christ. Here is my top five:

1) I am grateful that in all things I can have peace and confidence through God, who loves me.
2) I am grateful for the friends, family, church family and coworkers that have given selflessly of their time, encouragement, and money to help me through this time. The gifts are important, but even more important is the feeling of being loved and cared for, a lesson I will carry with me when this is over.
3) I am grateful for my two dogs. If you’re not a pet lover, that may sound silly, but they have given me comfort and laughter in abundance and I am thankful!
4) I am grateful for my home. I have a place to live where I feel at peace. My friends have even said my home “looks like me” and they are right. It’s a wonderful home for me in a delightful neighborhood and I enjoy living here.
5) I am grateful for my employment, which provides health insurance to cover most of my expenses. I am also grateful to have a job that will be there for me when I get back.

That’s my list for now. If I get to complaining, moaning and griping, feel free to send me back to this post!

For what are you thankful?

Jan 022015

Sometimes courage comes in small packages, more of a whisper than a roar.  It can be the simple things, facing another day of radiation, getting out of bed to get the exercise you need to recover from an operation, continuing with chemo treatments in spite of the side effects, that take the most courage.   I’ve found that I face difficult challenges better if they are sudden and over quickly, but things don’t always go according to my preferences!

“Courage doesn’t always roar. Sometimes courage is the little voice at the end of the day that says I’ll try again tomorrow.”
Mary Anne Radmacher

We all face struggles of one sort or another.   Where do you find the courage to quietly say “I’ll try again tomorrow?”   Here are some things that have worked for me.

1)  I have a great group of relatives, friends, and church family that have offered overwhelming support when I need it.   Sometimes, when I run out of courage, I borrow theirs.   I would be lost without these people and I thank them from the bottom of my heart.

2) I have found courage by reading scripture and other inspirational readings.   I try to read something positive every day to build my courage.

3)  I have calmed my mind and held onto my whisper of courage using recording meditations nightly to help me sleep and to build positive energy.

What are your tips for holding onto your courage in the face of obstacles?