Thursday, June 28, 2012

The Red Devil or How I Make Do With Linen Toe Wraps

Remember my previous mention of the "Red Devil"?   My new red Kool-Aid of a chemo?

Well, today is day 16 post chemo and the Red Devil is living up to its name.  Doxil (or in my case, Lipodox) is well known in chemo circles (betcha don't want to join THAT clique, do ya!) for its vicious side-effect to the skin.

I belong to an online ovarian cancer forum and some of my friends tell me their skin blistering is so severe they can wear only the loosest of clothing, a muumuu type dress, with no bindings or restrictions on the skin. That means no undies, either upper or lower! Just a muumuu! So far I am not needing to do that! I'm still wearing my normal clothing including undies.

In my case I get red welts and blistering on the palms of my hands and between my toes.  The skin turns an ugly purple-red and unless protected will blister badly.  After about a week it begins to heal (and peel) just about the time I get my next infusion. So the cycle seems to be about ten days of really sore skin...then ten days of healing...then sore again after the next chemo.

I used to think that those "old people" you see hobbling about do so due to knee or hip problems.  But no...very sore feet cause the same hobbling gait. Fancy that!

The toes seem to be the worst where they rest against each other.  I've used bandages on some but don't like to have the sticky part of the bandaid on tender red skin.

So yesterday I had one of my amazing, brilliant, lightbulb moments.  Remember last week's blouse project? The one where I shortened the sleeves?  That blouse is linen.  I took the cut-off sleeves and cut one-inch strips of fabric and tied them around my toes.  Of course, I can't wear shoes with them. (I can't wear shoes without them, either, due to the skin problems.)  The linen fabric protects the sore sides of the toes from rubbing up against the next toe, causing friction.  I know it's weird. But it works.

Other remedies?  I use cold packs on my hands and feet (and chew on ice chips) during the chemo infusion.  I soak my feet and hands in cold water now and then in the days following chemo.  And I take a couple cold packs to bed with me.  Wrapped in a linen tea towel they comfort my feet and my hands. And, in theory at least, they reduce the amount of doxil seeping into the capillaries under the skin, thereby reducing the blistering.

I'm thinking by tomorrow or the day after, the healing will begin.  I must be patient, I must be patient, I must....Wait a minute!  I AM a patient!  Just not a very patient patient!

As Christians we know that we are not exempt from the ailments of this fallen world.  But we do not despair! In the midst of affliction, physical and otherwise, we know that when we leave this earth, we will forever be at home with the Lord. That is where we must keep our focus. I will leave you with these encouraging words in James 1:2-3 " Consider it all joy, my brethren, when you encounter various trials, knowing that the testing of your faith produces endurance."  Endurance! Ah, that is what I need! And patience, too!

Sunday, June 24, 2012

Puttering With Sewing and Soup

Last week was hectic.  Today allowed a little relaxation.  I puttered, playing with a couple things I've been wanting to do.

I like button-front blouses...short-sleeve.  I never wear my long-sleeved ones.  So today I shortened the sleeves on two of them.  The result is perfect for summer wear.
Singer Model 15-91

The sewing machine is a vintage 1940s Singer model 15-91.  Isn't it a sweetie! I've used this machine on a ton of quilting projects...except that I've lost the quilting bug.  Nowadays it gets used for short mending tasks such as this.

Once upon a time, during my quilting days, I "collected" vintage Singer sewing machines.  At one point there were thirteen Singers residing in our house.  None of them newer than the 1960s. All of them in top-notch working condition.  Some of them took a bit of elbow grease (and WD-40) to get them up and running again.  Those old machines, if regularly cleaned and oiled, will outperform any modern day machine.

Paul Revere 1776 Copper Pan
But having ovarian cancer has caused me to look askance at all the "stuff" in our house.  Over the past three years I've been slowly getting rid of some things including some of the sewing machines.  I gave away several, sold a couple, junked one (and sold the parts on eBay).  Now I have only four...this black 15-91, a 1940s Singer 221 Featherweight, a 1960s Singer 403 and a marvelously well-maintained Singer 66 treadle from the very early 1900s in an oak parlor cabinet.  The 403 has zigzag features.  The Featherweight is too cute to get rid of. The 15-91 is my heavy-duty stitcher when I machine-quilt. And the treadle? Aw, I just like it. A lot.

My second putter task today was to try out one of my Paul Revere copper pans on our new gas stove.  The copper conducts heat quickly and I love how this saucepan simmered up a small batch of soup. And isn't it pretty!

The soup?  Using some leftover beef and noodles I added a can of beef broth and sauteed some onion, celery, and shredded cabbage, adding them to the pot.  A cup of canned tomatoes added to the flavor.

I'm still tired from the hectic past week. But I'm feeling better.  Being able to putter was a nice way to relax a bit.

Wednesday, June 20, 2012

The Parrot Died...Onward to Red Kool-Aid

Yes, I'm still alive "and well", so to speak.  Just extremely busy.  Today was no exception.

I can only say that today was an "adventure".  But today's adventure is not the subject of today's post.  No, no, that would take much too long.

Instead I just want to tell you that the colorful parrot (of previous posts) has died, so to speak.  Topotecan (or the "colorful parrot" as I called it) stopped being effective in holding my ovarian cancer at bay.

So I am moving the next drug cocktail.

I am now on Lipodox which very much looks like red Kool-Aid.

If you've been following the news about chemo drugs (which you probably don't unless you yourself are a chemo druggie) you know that Doxil has been unavailable in the United States since late last year.  It seems the contract manufacturer was found to be not properly maintaining its facility. But that's old news...if you wish, you can read about it here.

Happily, the FDA is allowing a supposed duplicate of Doxil called Lipodox to come into this country from India. I've had three treatments now.

I call it "Red Kool-Aid" looks like red Kool-Aid.  Some patients call it the "red devil" because of a nasty side-effect that causes ferocious blistering of the skin.

So far I've been fortunate.  My tumor marker, CA-125, has come down slightly.  And my skin has fared well except for about 10 days of red, cracked, blistered hands.  It felt as if I had a thousand paper cuts.  Shall we say it was slightly painful any time I touched ANYthing!

Fortunately, the skin healed before my 3rd infusion...and here I am, day eight of this third cycle, still doing well.  The next few days will tell whether or not the skin problem comes back.

Today?  A stressful day. A long day. Has nothing to do with my cancer.  Let's just say it is a good thing in our lives...but with a long and stressful learning curve.

God bless all of you who are reading this...and most of all, those who are going through difficult situations, health or otherwise.  Each day is matter what. And God is good, no matter what.

Heading to bed. Perchance to sleep.