What I Do With My Time

A friend of mine used to be highly involved in Relay for Life and would collect things that could be auctioned to raise money for cancer research.  That's when I made my first Chemo Survival Kit.  I am not treated with chemo infusions, but I have a rudimentary understanding of what that entails.  With a little research, I found some things that would be a comfort to someone going through chemo, so I put them into that kit.  

Fast forward a few years, and I started making kits and taking them to my oncologist appointments. So, you ask, how many kits did I make?  Two a month.  Unfortunately that is not even a drop in the bucket for the number of new chemo patients every month in my clinic.  I asked the doctor how many new chemo the clinic gets in a usual month.  The clinic serves five counties with satellite offices in three counties.  In a month there are 100-120 new chemo cases diagnosed depending on when screenings happen.  That's 1200-1500 new cases in a year.  In the few years I have been doing this, I average two kits a month, and sometimes I do extra when a friend finds out about someone they know who has cancer.  

What's in a kit, you ask? 

Included in any kit are:

• An afghan—either crocheted or made from polar fleece.  
• A hat
• Peppermints to aid in quelling the nausea
• A book to read while receiving treatments
• Plastic flatware—to keep from increasing the metallic taste chemo provides
• A satin pillowcase—feels better on heads that are losing hair
• A notebook and a pen for journaling, doodling, making lists, keeping up with all your cards and gifts
• A nifty tote bag to keep it all together and to take with you to your treatments

I include this list with a note that explains my own cancer journey and that every stitch on any item is a prayer for their healing and recovery.  This is not a cheap endeavor but I try to make it as economical as I can.  I buy the best quality yarn for the best price I can get.  I get heavy fabric remnants for the tote bags (usually those are 50% off, so there is a good cost savings).  I buy the books at the thrift store.  The plastic flatware comes pre-wrapped from when we get take-out.  I buy the satin on sale as much as I can, sometimes I can find that in the remnants as well.  Sometimes I will see tote bags or overnight bags at the thrift store that are cost-effective.  I get joy from doing this and because I am a patient, I am anonymous.  It gives me smiles to think I might have given someone else a smile in a tough time.  

So I spend my spare time crocheting, praying, and sewing the kits.  

 

It's Time to Put Off Decisions

 Just for starters, I love my gastro-enterologist.  He responds to my questions with phone calls, and then explains them in easy to understand terms.  But before he calls me, he reviews my case and what's been going on with the other doctors.  So for all my zebra friends, I wish you all to have such a doctor.  

So here's what's up:  it's not feasible right now to have a TIPS procedure,  I am borderline enough to qualify for the procedure, but medications and paracentesis will control the situation with my ascites for now.  When it gets to the point where I need paracentesis at least once a week, then TIPS will make more sense.  How do I feel about this? I am content to wait because I want what's best.  

In other news, the Carcinoid Cancer Foundation's newsletter announced that the monthly injections I get will soon be available in tablet form that I will be able to take daily.  The drug, an octreotide (generic name), Mycappsa has been granted orphan status by the Food and Drug Administration, which will make it available more quickly.  It was developed in Ireland (Go, Ireland!) and is finding its way to the US.  What this means for me personally is that I will be able to give up the 19-gauge needles in my backside every month (an insulin needle is 31-29 gauge--the smaller the number, the bigger the needle). 

It seems that life is three steps forward and two steps back, but that's true for nearly everyone I know.  I am content with that.