Logistics

I've gotten many good questions about my treatment plan.  It feels like time I explain how all of this works.

My cancer diagnosis is Peripheral Neuro Ectodermal, PNET for short.  It is related to Ewings Sarcoma which is a bone cancer.  PNET is a soft tissue form of Sarcoma, and where do we have soft tissue in our bodies?  Everywhere.  I call it soft tissue sarcoma.  For me, it attached itself to the kidney, which is actually very fortunate, because you have two kidneys and only need one.  If it had attached itself to say my calf muscle, or stomach that would have been very challenging.

Since soft tissue is everywhere, I will be having 17 rounds of chemotherapy.  This is very aggressive, many breast and testicular cancer patients I know have had seven or less rounds of chemo, because their cancer is localized to one specific body part.

I have two different chemo regimes.  Let's just call them A and B, it is hard to remember all the names of medications.  I switch between the two regimes every three weeks.
For A round: I am in the hospital for three days.
For B round: I am in the hospital for five and a half days.
I always start on Monday morning.

Each chemo cycle is 21 days, three weeks, a round being the part I spend in the hospital.  The timing is fairly similar for the two regimes.

Week 1:  Day 1: I report to the hospital, check in, situate my room, and get checked by the doctor to see that I am healthy for chemo.  THEN the medication is ordered.  Usually this process takes 3-4 hours.  After that, pre medications and fluids are administered, and about two hours later I start chemo.
Days 2-3 or 5: Chemo, hospital visits, sleeping, really wonderful nurses.  I loose my appetite, not sure if it is more the meds or the lack of tasty hospital food.  If you come visit me and want to bring me food, I will be eternally grateful.  Please just call first, as I loose my appetite about 30 hours into chemo.
I either get released from the hospital on Wednesday night or Saturday morning depending on the round.
24 hours after end of chemo: white blood cell booster shot.

Week 2: I am home, gradually feeling better, and in a sort of quarantine they call the Nadir period.  This is when my white blood cell counts are low and I am most susceptible to illness.  I feel very tired and lethargic, with a low appetite.  I am supposed to stay six feet from people at all times.  I am allowed to hug my husband, which makes me happy.  He has to wash his hands and brush his teeth a lot so I don't get bacteria. This is the week I feel the majority of my side effects, knock wood, they have been mild!

Week 3: By about half way through week two, I feel awesome and want to go out and be me, but I can't for safety.  In week three I can!  I hug people, eat out, see friends, go to the movies, cook food to freeze for the week ahead, bake for the nurses, shop for supplies and get my labs drawn for the next round of chemo, which starts the following Monday.

That is chemo, every 21 days for 51 weeks.  We are already in week 7 of 51.  Believe me when I say it is going fast.

I am not allowed to ever be in crowded places, like Disneyland, a hockey game, baby shower or birthday party.  

When I go to the store, I use cart wipes, and hopefully go with someone else so they can touch things for me.

I have a new found love for FaceTime!  It is really the only way I can see my students this year, and is nice when you are in a limited contact situation for a long duration of time.

Nurses are amazing!  I feel like I have new friends.  And these friends do things like check my toilet behaviors, draw my blood and in one case catch vomit.  I am already thinking of ways, besides my regular baked goods, to thank them when this is all over.  People often question why I chose the path to teach, it has a lot less bodily fluids than nursing!

Please keep asking questions, this teacher is happy to answer them.  I am curious by nature and love to keep everyone informed about this interesting process.

Dracula and Halloween

*I talk about blood a lot, so if you are squeamish, maybe skip this one*

I've been feeling good, so I've been busy.

Last round, which was three weeks ago already, went pretty well.  In general, I had less side effects with this second regime of chemo.  I did, however, have to have a blood transfusion.  My red blood cell count got too low, and there is no booster then can give you, so they give you blood.  Strangely, about halfway through the transfusion I started feeling really peppy, but that is what it is supposed to do!  It was just odd that this happened right before Halloween.

Thursday was Halloween and I was Rosie the Riveter.  The whole idea was based on the fact that I've got no hair, and needed to figure out a costume that covered up my head.  Recently on the news our oldest park ranger has been getting a lot of press with the government shut down.  She is 90 years old and works at the Rosie the Riveter National Historical park in Richmond, which is right across the bay.  The combination of the news stories and my baldness inspired a pretty good costume I must say.  Red head scarf, blue coveralls, a workman's belt and a whole lot of makeup, done.  I was in those coveralls all day, and if you have ever worn a one piece outfit, you know what a pain in the butt it is to use the restroom.  Needless to say, I did not consume much to drink.  This came to haunt me on Friday.

Friday I went to go do my regular blood work.  I get this work done every three weeks, just before I start chemo to make sure I am healthy enough and as a base line for the next round.  They can't get blood out of you when you are dehydrated.  I felt fine, but after four nurses, three needles and blood that clotted as it came out, I had had it.  I asked what my options were.  They sent me home to hydrate and try again the next day.  So, Saturday morning after about 12 glasses of water, coconut water, two gatorades and a ginger ale, my blood throughly pumping from my exercise class, it took PJ about 3 minutes to draw my blood.  Yeesh! I will not make that mistake again.

Tomorrow I go back into the hospital for round three.  The medications for this round are pretty hard on me so I'm not too excited, but like I said to a friend this morning let's just get this done and move forward.