RECORD YOUR JOURNEY

I was e-speaking with a very dear friend the other day and somehow the subject of diaries & journals came up.  She said that she had always kept a journal until she got cancer – then she stopped.  I told her that I had tried to keep a journal of some kind many times over the years, but just couldn’t – until I got cancer.  Odd, isn’t it? But I may have the answer.   She has always been a much more disciplined person than I am.  No, that’s not a contradiction of everything I’ve said before.  I said I was an anal-retentive, organizational freak.  They really are different things.  Once again, I’m off topic. 

 I have often said that keeping a journal while dealing with cancer can be a very valuable tool.  Mine began after the “debulking” experience, mainly to keep track of temperatures, blood pressures, medications, and symptoms.  I was dealing with one infection after another, so this type of log was useful.  I also found that by recording my symptoms and reactions to certain treatments, I could better deal with the ones to come.  It became a sort of reference manual for recurrences but which gathered layers of dust during remissions.  It’s this reference manual that I recently reviewed for this blog. 

I know I’ve discussed some of the odd side effects that I’ve had over the years – fluent aphasia, hair loss, equilibrium issues (saying really stupid things, going bald, and tilting and tripping a lot).  My journal reminded me that there were lots of other byproducts of chemotherapy that were more common and equally disruptive.  So, for the sake of those of you who are currently going through the ultimate test of resilience – here are a few things I learned along the way.  I’m sure there is something here you can relate to.  Please remember, these are things that helped me – they may or may not work for you – and ALWAYS check with your physician first before trying anything new!  WARNING!  If you faint at the sight of a prescription pad, you may not want to read any further!  But please be aware that people with cancer deal with these and so much more every day. 

o   Doxil – those of you on Doxil, God Bless! I always thought I was pretty tough, but trying to “manage” the effects of that drug brought me to my knees.  I’m not saying it’s a bad drug – and I’m not saying that everyone has the same issues – I’m just saying God Bless you!!!

o   Whenever I had any kind of chemotherapy, it was followed – about 72 hours later – by abdominal pain.  I always felt the pain demonstrated the intelligence of those little cell-destroying drug molecules – they knew exactly where my cancer was and they headed straight for it!  Best thing to do is to sit down, put your feet up, and watch something mindless on TV.  Embrace the pain knowing that the little guys are doing their work. 

o   Acid reflux was never a problem until my most recent bout.  I tried all the recommended tablets, capsules, and prescription remedies to calm the dragon fire but, in the end, a good swig of ice cold Mylanta or the store’s brand worked better than anything else.

o   Vertigo has been an off and on thing with me, but when it’s “on” it’s really scary.  It just comes out of nowhere with absolutely no warning.  I’ve found that ice packs on my neck and wrists help shorten the event. 

o Ice packs also work well for PPE (Palmar Plantar Erythrodysesthesia) also known as hand and foot syndrome.  This nasty encounter was brought to me by the makers of Doxil.  Its first appearance usually looks like sunburn.  Then the affected areas can become dry, numb, tingling, and then they peel.  The soles of my feet have shed so many layers of skin that I actually slip on tile AND my carpet if I try to go barefoot.  My feet are like a pair of old sneakers that have lost their tread.  This symptom needs to be treated as soon as it rears its ugly head. At night I apply a thick layer of anything that is guaranteed to stain your sheets – covered by socks.  Not attractive, but effective.  Infections are always a possibility in open wounds, so please be alert.  A small crack turned into a mean infection which required postponement of my treatments for 2 weeks. 

o    If constipation is an issue for you (isn’t this a fun blog???) take whatever medications you use right after the treatment rather than waiting for the discomfort to begin.  The trick there is to know when to stop them.  One extra dose can overlap into the “diarrhea” phase and that’s just not a pretty site.  I always felt that this phase was a good sign, though – the evil drugs had done their job and were now exiting the arena.  But there always came an end to that phase too – the day when I headed straight to the Immodium!

o   I know a lot of you are sold on the Magic Mouthwash for mouth sores.  I know it’s great, especially if your sores are trying to migrate down your throat.  I always found warm water, salt, and baking soda worked for me.  Dry baking soda applied directly to the lip sores worked well, too.  I had one sore inside my bottom lip that was so big and so relentless that it actually left an indent in my lower lip for months.  I couldn’t drink a cup of coffee without a napkin under my mouth. My husband thought it was hilarious.  All liquids drizzled out through the not-so-little funnel.  I’ve heard of some weird side effects, but drooling was never listed on any information sheet that I saw. 

o   For some reason, cooking and especially baking do not go well with chemotherapy.  Granted, food doesn’t taste as it should for a while after treatments – BUT how does the drug make my cakes fall? my pies soggy? my muffins taste like YUK? I’ve been making Irish Soda Bread all my life, but during chemo it comes out like Russian artillery shells.  I finally gave in and enjoyed Publix bakery until the drug left the arena!

o   Anti-nausea drugs worked great for me, but only if I stuck to a strict regimen: 1 before bedtime, 1 as soon as my eyes opened in the morning and another about an hour before dinner (2 if I was doing the cooking).  Fortunately this only lasted for a few days after each treatment.

o    

      Fatigue – you can’t escape it, it’s part of the package deal and there’s only 1 cure – take a NAP when you feel you need it – and you will need it!!!

Some days, when all else failed, I knew that my nightly wine would soothe my depleted, beleaguered old body.  Now I’m NOT advocating alcohol as a treatment for side effects.  I drank wine before my diagnosis and I had my physician’s permission to drink it during treatments and I will continue to drink it until they pry it from my cold ... – you get the idea.  I like my wine!  It’s a very comforting, reassuring part of my day.  It always has been and it’s especially soothing during active treatments.  Once again, I’m not pushing alcohol, just talking about my own ways of handling this vile, cowardly disease.     

If anyone would like to share their “symptom management” techniques, please send them in.  I’d be happy to share them with our readers.  For now, remember BE PROACTIVE – STAY POSITIVE – STAY STRONG!”