www.cancermonster.net

I am home.

I am sorry that it has taken so long to get writing.  I will try to get you caught up as quick as possible.  It will take a couple installments to tell though. So much has happened.

It was 1,000% different this time. And not just because my company was different!  Anita took me up on Wednesday. When we realized that Dan shouldn’t come to the hospital with his cold, She stayed until Friday Morning. We really had a good time taking advantage of the Arts in Medicine Department. Anita got started paining on silk!

We painted and crafted and on the second night we were even serenaded by a Lady Chanter with singing bowls.  It was an enchanting sound.  I have to admit, that I was just starting to get nauseous by that time in my cycle.  If my chanting lady had shown up an hour later, It might not have been so relaxing an experience.  (I think it’s because I studied music in college - learning how to take music apart to hear each individual sound.  When I am nauseous now, music makes it worse for me. I am probably the only one effected this way. . .)  When Anita had to return to Ft, Myers on Friday morning to open her Salon, my mother took her place.

It was great having mom with me.  My mother has a frame of reference for me, having already beaten back her own CancerMonster.  It took her two years to finish her own regimen of Breast Cancer Fighting drugs.  The first cycle she was unable to tolerate and it had to be changed.  She can relate to what I am going through. And she kept my mind off the fact that I was getting a couple units of blood to replace that which the chemo had eaten.  This took most of the day and while my hemoglobin was being replenished, I was extremely tired.  However, once the cocktail had made it’s mark, I was ready to get out of that bed!  Seeing what the added red juice had done for my energy level, Mom ordered up a couple’a bags for herself!  But no go. Sorry mom.  I wanted to work some more on my silk painting. Mom found out how relaxing it was and created her own masterpiece!

After the painting lesson, I took mom on a tour of the hospital.  I wanted her to see the Art studios (there are two) and the art hanging on the wall (there hundreds if not more.)  I am so fortunate to be at Moffett Cancer Center.  They believe here in treating the whole body.  Art, music, meditation, and medicine.   And we stopped in the Chapel as well, to say a prayer and give thanks for what we have.  We lit candles for our loved ones and for some people we had met along our tour.  I enjoyed the time with my mother there in the chapel.  My mother lit a candle on my faith a long time ago.  I will never forget being the 5th of six kids crammed in the church pew as a child.

My sister, Pam, took the next shift with me on Saturday evening.   Pam’s job in my recovery here in Florida has been that of Camp Counselor.  She loves being with my kids and they love being with her.  Aunt Pam is FUN with a capitol F. With Dan down for the count, Pam pitched in with baby sitting me instead of the kids.  In my family, we don’t leave people alone in the hospital.  The mind is either a powerful partner or painful adversary.  When you are alone, you can think yourself off into a ditch, you can.  We always keep someone around to make sure that doesn’t happen.  And we, as a family, know that the hospital staff is busy and they just aren’t aware that we are a demanding and needy folk.  We keep a body around for fetching things.  And there is one more thing that extra person does . . . Keeps the one in the bed from Escaping!  Yes, Yes, Pam was designated my last guard because she was always the fastest runner of all of us!   Pammy was sent up on Saturday night to keep me there one more bag of Mesna and tote me back home again.  We had a pajama party, Pam and I.

It was nice to sit on the cot and gossip like school girls.  I can’t remember when we last done that.  We tried to get her laptop to connect to Moffitt’s Wi-Fi system, but that didn’t happen until there was less than an hour left on my last bag of fluids.  Soon, though, the chemo cart was beeping down to 0 and it was time to call a end to the second cycle of Killer Chemo.

“Hurry Pam!  Get a wheel chair!”  The chair wasn’t for me though.  It was to cart down all my things.  I made it.

Two down.

I made it all the way through without loosing my mind.  The difference in the dosage and the addition of the Thiamine made this round of Chemo do-able.  If you remember, the addition was to be Methylene Blue.  The medical team had a conference on the use of the Methylene Blue verses Thiamine- better known as Vitamin B1.  Evidently, “The Blue Stuff” has some side effects of it’s own.  One being the ability to turn the user totally blue like a smurf!  Methylene Blue acts as a sponge soaking up toxins, but it leaves of a trail of blue dye where ever it goes.  The Thiamine, on the other hand, is a natural substance that the body makes. Vitamin B1.  No additives.  No dyes of any color.  And it worked.  I had a 15 minute Thiamine drip every so many hours.  I could tell when it was needed.  As my skin started to get itchy or my eyes started to flash, a new bag of Thiamine would show up and I would soon be fine.  I made it through this week of Ifosfamide because of the (non-bluing) Thiamine.  I had to wonder why everyone isn’t automatically given the Thiamine when faced with Ifosfamide.  They already bundle Mesna in there to protect the bladder. Why not protect the mind as well.  It is the mind, after all, that must make the decision to accept the protocol.

Then Sunday Pam drove me home. And the Thiamine that had been dripped into my veins in the hospital wore off.  About an hour or so after I got home (it takes 2 ½ hours to get home- time wise that computes . . .), I started to get weird.  Haha  OK, weirder than usual.  I pulled away from my kids and husband and headed to the bedroom.   I’m not sure what happened that night, but by eight o’clock or so, I was out of it.  There was something about a flower that I walked through. I can see it still.  But I still can’t explain it. The flower took away my senses.  I tried to explain what was happening to Dan, but I could see by the look on his face that I wasn’t making any sense. So I went to bed.  I remember I woke up at 11:00 and Dan gave me my medicine.  I still couldn’t talk to him.

Monday morning, Dan woke me at 7:40 with my medicine for the morning laid out.  I usually get Brandi up for school at 7:20.  I was upset that I slept late.

“Are you OK?”
“Ya, I think I am.”
“Do you remember last night?”
“Ya, I think I do.  I couldn’t explain then though.”
“You couldn’t talk at all.  You had me worried.”
“Ya, me too.  But I’m alright now. You go get the kids up.  I’ll take my medicine.  I’m alright.”
“Look I can stay with you . . .”
“No, don’t be silly, I’m all right this morning.”

But I wasn’t quite right.  I wanted Dan to go on to work without worrying about me.  I knew that I could get someone else to come over if I needed them.  So I cowboy-ed up and got the kids ready for school.  I pushed the four of them out of the house as quick as possible.  Then I called Anita.

“I think I need some thiamine.  I kinda flipped out last night.”  And I told her all about tip-toeing through the tulips until I was speaking another language that I didn’t even recognize myself.  I told her I was feeling pretty weird still, but at least she could understand me.  She said to hold on, she would find a health-food store and bring me the Thiamine as soon as possible. I hadn’t realized it the last night, but once the hospital dripped thiamine was gone from my system, I started to have the side effects that the vitamin supplement was keeping at bay.  Why would they not send home some extra hero juice to hold me over until the IFO totally seeped away?

I laid down on the couch and fell asleep.  The next thing I knew a car was pulling in the driveway. I didn’t see who it was and I wasn’t dressed for company.  The closest thing I had to hair was my CancerMonster Ball cap sitting on the coffee table.  I snatched it over my bald head and answered the door.  It was my mother.

“Are you ok?”

Nita.  She sent in re-enforcements.

“I’m OK, mom.  Nita sent you?”
“I had to see for myself. She had to wait on a phone call and didn’t want you to be here alone. And I brought my mop and sweeper. I’m going to clean your house.  I’ll stay with you until Dan gets home.”

I called Dan.  “Mom’s here.  She said she came to clean the house.  She is going to stay all day.”
“I cleaned the house yesterday!  Did you call her to come stay with you?  You didn’t want me to worry did you?”
“I didn’t call her.  Anita did though.  Lol.  Anita is going to pick up some Thiamine.  I didn’t want you to worry.”
“I was worried.  I’m glad your mom is there.”

Me too.

I slept on the couch much of the morning while mom fluttered around me trying to find something Dan forgot to clean. I heard her answer the phone near lunch time.  “She’s asleep. She just got home from her second round of Chemo last night. No, we’ll both be here. We are looking forward to meeting you in person.”

“Who was that, mom?”
That.  Was an Angel.”

One of my Christmas Angels.  No, I imagine she is an a full time Angel. But this one has wrapped her heart around my family during what could have been the toughest Yule Tide Season of our lives.  Remember the ladies that brought over the Christmas tree and the decorations to adorn it?  They work with “Angel.”   “Angel” was coming over to bring the children Christmas Clothes - early to make sure they fit right.

My Lord, what a blessing.

As I am trying to hang on to Reality, the reality is that people care.  People are good.  And nothing is left to chance.  MY “Angel” owned a bedroom set that Anita happened to buy from her to hold the softest mattress ever made.  A mattress soft enough to comfort her little sister who was fighting for her life.  Little did she know, the bedroom set she bought came with a Christmas Angel.

And hopefully a life long friend.
This brings you up to just Monday afternoon.  I have more to tell you about my week.  Let’s call this “Part One”  and I will continue writing for tomorrow.   Dan is coming home to get us.  We need to get to the store.  It is Christmas time, after all.

I am ok.  I love each of you. So much is happening in our lives that the story is taking longer to tell than normal.  And I know that my writing is not up to snuff.  It’s hard to write when your asleep.  Stay with me through this mind altering stage, please. This too will pass. The story is far from over.

Know this:  My God is Bigger than CHEMO.

Even Sarcoma Chemo.  How’bout’dat?