Sunday, March 3, 2013


Hi everyone,

I thought I would give you an update on Treatment #2 of 6 (hopefully). This time we were scheduled at 9:00 AM which is absolutely fantastic.  It doesn’t seem like such a good idea when the alarm goes off at 7:00 and I’m NOT an early morning person!  The fantastic part comes in when we get there and I’m one of the first to be seated in the chemo room.  This means I get my fluids almost immediately followed in precise sequence by visits from the pharmacist and nurses wearing protective gowns and masks and bearing bags of very toxic drugs with scary sounding names.  (Really, I got up at 7:00 for this???  Yes, and I will do it again in 2 weeks, gladly! ) The entire process usually takes about 6 hours – when you get there at 9:00.  If you’re scheduled at 10:00 or 10:30, you find yourself in the second wave of patients and possibly caught in a domino effect which can keep you there until well after 5:00PM.  The staff are all perfectionists – thank God – so everything is checked and double-checked for patient safety.  If one patient’s chart isn’t readily available, or a medication order isn’t quite clear, the entire process slows down.  Now you see why being scheduled early has its perks. 

The day went very well and we were on our way home at 3:00PM.  I was feeling great.  Typically, I would have eaten a normal dinner – had a glass or two of wine – maybe some dessert and gone to bed.  Instead, thanks to my newer and grittier journaling after the last treatment, I had ½ a glass of wine, a small bowl of chicken noodle soup and a few Wheat Thins.  I took my anti-nausea medication, Miralax, and antacid pills and went to bed early with a good book.  I slept like a baby. 

This is a good place to mention that my hair began falling out, with a vengeance, a few days before this treatment.  So, when I say I went to bed early with a good book – it was also with a nylon sleep cap on my head – reminiscent of the old Lunch Lady caps – to catch the falling hairs before they covered my pillow.  Very attractive!  So now would be the appropriate time to breathe a sigh of pity for my poor husband! 

The next morning my hair loss was so aggressive , I thought a small animal had snuck into the shower with me.  My God – I didn’t know I had that much hair to lose.  Incredibly, I still had about 1/3 of it left.  The last times I have lost my hair to different drugs, I purchased mail-order wigs but rarely wore them.  I didn’t think they looked particularly good and they were uncomfortable.  I stuck with baseball caps and sun hats.  This time, we went to a wig store and bought a wig that is comfortable and I actually like it!  I’m getting more compliments on this wig than I ever got on my own hair.  It’s a very pleasant surprise! 

The next day was my Neulasta shot at 3:40 PM.  The shots have to be administered no less than 24, nor more than 48, hours post treatment.  That night is usually when the pain begins.  The purpose of the shot is to induce your body to make white blood cells so your immune system doesn’t crash.  In the process, every joint in the body feels like a huge toothache.  Since the NSAIDS don’t stay down for me, during this phase of the post-treatment, I intended to tough it out with heating pads.  Fortunately for me, one of Dr. M’s nurses – and a dear friend – suggested a prescription painkiller.  My first reaction was, Thanks – but NO!  If the NSAIDS upset my stomach, what will a narcotic do to it?  After I had time to process the offer, I realized that having it in the house might not be a bad idea – considering the number of times I had said “Oh cr#%p, I forgot how this can hurt” over that first week. 

Again I ate very light but frequent meals that day – custard for breakfast, soup and crackers for dinner again.  I have my own special “sick soup” as I call it.  I love homemade soups and I love to make them – but when I feel sick or have no appetite or just feel the need to really baby myself, it has to be Lipton Noodle Soup – in the box.  I’m not sure that actually qualifies as “soup” but it does say “made with real chicken broth” on the box.  I don’t care what it is, it soothes my body and my soul when I really need it!  That and my Wheat Thins and I’m happy! I made it through the night with no acid reflux and using heating pads for the pain.  Not too bad! 

The next day was another story.  The pain started out pretty early and pretty harsh.  I decided to try ½ of one of the painkillers.  My logic was that, if I was going to get sick, better in the daytime than in the middle of the night.  Surprise! It stayed down and it took the edge off the pain. Again, I stayed to the light meals to offset the acid reflux at 3AM and it worked.   I took another ½ of a painkiller before bed and slept pretty well.

I’ve continued the ½ painkiller 2 or 3 times a day for the past few days.  I’m so grateful to "J" for suggesting it.  I’ve started to return to a more normal eating pattern, just not overloading my stomach.  I think that’s one of the most important things I’ve learned this time around.  Even though I may feel great the first day or two, eating “normally” catches up around Day 3 or 4.  It’s just not worth it!    It’s now Sunday and I’m past the worst of the days.  Each day for the next 2+ weeks will get better and better.

Two years ago, when I was on Doxil, I remember "J" saying that most of their patients learned to “manage” Doxil’s side effects.  Unfortunately, for me, managing anything remotely caused by Doxil was like trying to “manage” a 400 lb. octopus in a glass factory!  

This time I’m actually a little proud of myself for managing the side effects – so far!!!  If I can pass any wisdom on, it would be to try lots of different things until you find something that works for you. Just sit there and try to think what makes you feel better and what you’re doing that may be worsening your symptoms.  You may just come up with your own solution – plus it’s good exercise for our Chemo Brains!

God Bless all of you and thank you for your continuing good wishes, jokes to brighten my day, and, most important of all, your prayers.