EIGHTH ROUND OF CHEMO

Today is June 12, 2015.   On June 3, I had my eighth round of chemo and it went a lot better.  I asked my nurse about extra IV fluids, so she started me off with that before my chemo.  It took an extra hour and a half to receive it all but it was well worth it!  I felt so much better this time around.  Not as much achy feelings, no headaches, and even my cold sensitivity isn’t quite as bad.  Even the bone pain from my Neulasta shot isn’t as bad this time around.  I’ll definitely ask for extra IV fluids from now on.

My daughter, Abigail, graduated high school last month.  It feels like their school years flew by.  I try to stay as on top of everything in their lives as much as I used to but I sometimes feel too tired to be as involved as I used to be.  And I feel a little guilty for it, but my kids understand and they have been so supportive and encouraging.

These past few months have flown by too and I nearly forgot about getting Abby enrolled at Front Range Community College and getting financial aid but we got it done.  And she’s got her sights set on attending CSU maybe as early as next year.

I’m looking forward to not having to wear an ostomy bag anymore, but that won’t be until my chemo is finished.  If I get all 12 treatments that brings me to the end of August.  I’m used to the bag and I only change the entire apparatus once a week.  I don’t have any trouble with it anymore.  But it’s become so cumbersome, especially with my clothes.  And I can’t wait until I can sleep on my tummy again and turn over in bed naturally without waking up for fear of breaking my bag open!

SEVENTH ROUND OF CHEMO

Chemo round #7 went the same as 6th did, same feelings of body achiness and headaches.  I also wasn’t in the mood for drinking much water the first several days because of the sensitivity to cold. This has made my digestion worse and I feel crampy and bloated often.  My case manager through my insurance suggested that during my next round of chemo I ask for extra IV fluids.

SIXTH ROUND OF CHEMO

My 6th chemo session was April 22, 2015 and was the first where I felt more physically ill, with generalized body aches and a lot of headaches and dizziness.  It’s the headaches that feel the worst. Overall, I’ve been feeling very tired and sluggish the first couple weeks after chemo, and the third week I’m finally feeling back to normal.  But then it’s time for my next round.  I’ve also noticed that I start losing my voice the day of chemo and have hoarseness for a couple days afterward.

I got a new symptom too.  The chemo starts to break out of the blood vessels mostly in the soles of the feet and palms of the hands.  It causes redness, swelling, pain, and itching.  The only symptom on my hands is it causes my thumbs to get red and a bit swollen.  I have most of the symptoms on the bottoms of my feet.  It begins about a week and a half after chemo, where my feet start peeling a lot.  I made the mistake of using an emery board to scrap off the dead skin.  This helped tremendously in getting all the peeling skin off and making my feet smooth again, but I found out it causes too much irritation.  Afterwards my feet began to get extremely red, mottled, swollen, and extremely painful.  It’s hard to walk for a couple days.  Then the pain settles down and the itching begins, and it itches constantly and continuously for about a week.  I’d rather put up with pain than constant itching. Then, just a few days before my next round of chemo my feet go back to normal.

I still consider these minor side effects.  I still have my hair, and I don’t have nausea and vomiting! And hey, it’s not breast cancer so I still have my breasts too!

THIS IS MY DO-OVER!

When I was first diagnosed with my cancer I responded to the news as if I was an end-of-life patient being told I could die at any moment.  That’s how shocking the news was to me.  I never thought I could have something as bad as cancer.  It was my worst fear come true.  And there was no do-over!  I couldn’t go back and prevent it.  I couldn't do anything to make things go back the way they were before I had cancer.  I had no choice but to accept it and move forward, my new normal being a cancer patient facing tons of phone calls, doctor’s appointments, procedures, surgeries, dealing with insurance, pain, medications, radiation, chemotherapy, side effects, and a lot of crying and feeling sorry for myself.

The first couple of weeks were a blur as I cried a lot and as the days rolled together, with everyone rallying around me telling me it was going to be ok.  But I needed it to be ok in a way that let me feel I had some control over my situation.  Within a couple weeks, having met all my doctors and hearing their treatment plans, I felt a lot better being reassured that my kind of cancer was very treatable and curable.  Once I learned the logistics of treatment it set my mind at east and allowed me to focus on taking things one step at a time.  I stopped looking at the past wishing I had caught the cancer sooner.  I stopped looking toward the future for relief and happiness.  I started focusing on what I could do at this very moment and realized that that was my do-over!

Instead of putting things off and looking forward to something in the future I was now going to only focus on the present moment and enjoy myself despite the cancer.  Lots of things had to be put off because there’s only so many hours in a day.  Things I would have spent my time on before the cancer were replaced with details that would help organize my day.

You can’t let yourself all apart in despair when you have to keep your head on straight to make doctor’s appointments, call your insurance company, get prescriptions, go for daily radiation treatment, think about exactly what you’re eating and drinking because your colon isn't working right anymore, and still maintain all your normal daily life needs.  When you look at it like that, there’s simply no time to fall apart over it.  Just do what needs to be done.  And the only way to be at peace with this new normal is to take it one step at a time.  And during my free time, I'm consciously choosing the best way to spend my time and my attention.  I even choose my words and thoughts carefully.  No more taking life for granted.  This is my do-over, my chance to still be here and make the most out of it.

FEELING NORMAL AND HAPPY AGAIN

I’m really starting to feel like my old self again.  I’ve been reducing my pain meds and only need to take them occasionally.  I can sleep for several hours at a time now, most nights.  And I’ve been going for long walks.  It’s all helped my mind and brain feel clearer and I can hold my attention on things again.

I’ve started playing computer games again.  I’ve started reading again.  And I’m getting back into my psychic, paranormal, and spiritual practices and studies.  I love to meditate, use hemi-sync, have out of body experiences, and I’m finally starting to get back into all those things.  I even bought some new brainwave entrainment CDs to help me.  With all the stress and constant care and attention on my health lately I can feel my brain probably spends way too much time in beta.  One way to help kick myself out of that is to daydream more, fantasize, and calm my mind and body.  Everything I've been doing has completely taken away my stress and restless nights.

FIFTH ROUND OF CHEMO

The chest port made my 5th chemo treatment go so smoothly, and it was nice not to have my arm veins poked anymore.

My “chemo arm” has gotten very swollen, very hard, and turning red.  I called Dr. Witta’s office immediately and they had me come in to have it looked at.  It’s cellulitis.  I’m now on steroids and antibiotics.  I was sent for an ultrasound to see if there could be a blood clot, but it was all clear.  Dr. Witta also set me up for some therapeutic massages to help clear my lymphatic system in the arm.

Everyone in my office has had either a cold, sinusitis, or the flu, except for me!  I definitely cannot get sick.  And I’ve been sleeping better and longer which is a huge improvement.  I only get up to empty my bag in the middle of the night if it’s very liquidy or very full.  Otherwise I just leave it and go back to sleep.  It’s helped a lot.

I was asked to write an article for an online Canadian ostomy magazine about my story.  I’m excited to do it.  Maybe my story about my cancer can help someone else.

CHEST PORT PLACEMENT

On March 11, 2015 I went into the hospital to have my chest port placed.  It was so much simpler than I believed it would be.  If I had known how easy it was I would have done it back at the beginning.  I blame it on lack of information.  The surgeons made it sound like “Hey if you want it, get it, if not, don’t worry about it.”  Not to blame them, but I wasn’t very well informed!

It was my chemotherapy nurse who encouraged and convinced me to get the port and explained how simple it was.  I was under the impression that having a chest port meant I’d have tubes sticking out through my skin and that I’d have to do my own insertions and flushings and I’d have to worry about clots.  But the port is completely under the skin and I don’t have to do a thing!

I asked the surgeon, Dr. Salinger, if he wouldn't mind taking a few photos for me!

So here's what it looked like when I got home from the hospital:

And here's what it looks like three months later, (June 12, 2015).  You can barely see three little bumps below the scar:

FOURTH ROUND OF CHEMO

My 4th round of chemo didn’t go so well.  Since the last two IV pokes were in my left arm I thought it would be a good idea to switch back to my right.  Most all of the other patients in the infusion room take naps but I like to read and study.  It’s hard for me to sit for 3-4 hours at a time and not be doing something.  So I read, study, take notes of what comes to mind that I can use for my next book or I write notes about some other thing that’s on my mind.  I made the mistake of doing a lot of writing that session without realizing I was moving my right arm a lot.

And that’s why I think it’s my fault that the IV pulled out of the vein inside my arm.  At first I noticed a little swelling.  Not much.  Then my arm began to get a little hard and tight and I could really notice the swelling.  When my nurse finally came back into the infusion room it was another patient who got her attention for me.  He was sitting on the other side of the room and could see my distress and told her, “She needs you now!”

The nurse immediately stopped the chemo.  It had infiltrated my whole forearm and started to hurt badly.  The swelling grew so quickly that before I knew what was going on it had already become that bad.  They didn’t blame me but I know it was my own fault.  The veins at this point had already been so damaged and I had no idea that any movement of my arm could cause the IV to slip out of the vein.  

I wasn’t able to leave.  They had me sit there a couple more hours to receive extra IV fluids to help flush out my arm, and we couldn’t finish the chemo either.  This made me apprehensive but they reassured me it would be ok.

They moved me across the room next to the man who had gotten the nurse's attention because there was a plug there for a heating pad.  The heat along with a moist washcloth greatly helped with the pain and swelling.  Moist heat, not dry.  I tried it with just the heating pad and that’s pretty painful.

Now I was getting scheduled to get a chest port.  Darn!  I didn’t want to have to do that but now I had no choice.  There was no way they were going to continue compromising my veins.  The veins were now just too weak to take it anymore and there was no point in risking it.

I thanked the man for getting the nurse’s attention.  We talked the rest of the time, sharing our stories.  He was one of those with a “much worse” colon cancer situation.  His had spread to his liver and his lungs.

THIRD ROUND OF CHEMO

My 3rd round of chemo was February 18, 2015

I got the IV in my left arm again and had no problems.  I was still so happy I could take IVs and not have to use a port.  The side effects this time around were a little worse though.  Fatigue, body aches, and more extreme sensitivity to cold.  I had severe hand cramps for days where my hands would freeze into a tight claw hand.  Everything eventually slowly fades and it’s my third week after chemo which feels the best.  But then it’s back for another round.

Dr. Witta sent me for a barium enema with fluoroscopy because of the pain I was still having.  He wanted to make sure I didn’t have a fistula.  It was a very unpleasant experience but it showed everything to be working correctly.  And I learned something.  All that colon mucus that’s naturally supposed to come out, doesn’t.  It sticks to the sides of your colon and becomes hard.  It collects and clumps together and makes your colon act like it’s got a lot to push out.  So the colon goes through its contractions like usual but it can’t get the mucus to move because there’s no water.

This barium enema at the hospital not only cleaned me out there but kept cleaning me out for several days.  I’ve never seen so much mucus in my life.  It taught me that I needed to be hydrating my colon.  Why didn't anyone suggest this to me??  So I texted my surgeon asking if it was ok for me to give myself home enemas, and he said it’s perfectly fine.

So now that’s what I do.  At first I was doing it about once every week or two.  It hydrates the colon, loosens up all that mucus, and then flushes it right out.  It’s kinda painful because it stimulates the intestines, and the contractions go on and on and on.  The pain I used to have around my tailbone area goes away after I’m cleaned out.

I’ve been able to sleep more than just a couple hours at a time and that’s been so good for my mental state.

BEEN AWAY, NOW I'M BACK

Today is June 12, 2015.  It’s been four months since I’ve updated my blog, and all I can say is it’s because my mind has been elsewhere.  That’s a good thing.  I’ve been back to my old self and doing the things I enjoy doing.  I’m hardly focused anymore on my cancer or wearing an ostomy bag.  In fact, sometimes I completely forget I wear an ostomy bag.

Last week I asked my oncologist, Dr. Witta, how many other patients have my same cancer and he has a few but theirs is worse.  “We caught yours early.”  I still don’t feel it was early enough.  Stage 3 with 3 lymph nodes was scary.  I can’t imagine having it worse.  But like I said, I hardly think about it anymore.  Dr. Witta said he considers me cancer free already.

Last week I had my 8th round of chemo.  The max is 12 rounds and I want to get through them all.  And as long as my side effects aren’t too bad I can continue.