Fear

I’ve tried to remain optimistic in this journey, and I intend to return to that state of mind, but I just have to tell you, sometimes this is frightening.  I’ll tell you why in this brief blurb.   

Oregon hosts an annual bike tour called Cycle Oregon.

I have never participated, but may one day??  It looks fun, challenging and worthwhile.  Anyway, in 2011 the ride went through Riddle, OR where a gentleman named Mark Bosworth ended up disappearing.  It is a tragic story, more info here charley project: Mark Bosworth.  He still has not been found, and his family has set up a Mark Bosworth Fund to sponsor first-time riders for the week long Cycle Oregon Ride.   This year (2016) the fund sponsored 5 riders.  http://markbosworthfund.org 

Why am I telling you this? 

Because Mark and I share a diagnosis.  From the Charleyproject website:  “Bosworth was diagnosed with non-Hodgkin’s lymphoma, a cancer of the blood in 2007.  He underwent chemotherapy and went into remission, but the cancer returned to his eye in 2009, and he had more chemotherapy treatments as well as radiation.  Bosworth had a bone marrow transplant in April 2010 and went into remission afterwards.  At the time of his disappearance, he had been complaining of severe headaches and had been confused and disoriented; his oncologist believes the lymphoma had possibly metastasized in the frontal lobe of his brain.  If this scenario has in fact occurred and the cancer is left untreated, Bosworth will become increasingly confused and then die in a matter of weeks or months.”

Big sigh. 

Mark was 50 years old when diagnosed and in great shape;  I am 52 and in not so great shape, especially with this hernia.    I am scared.  Then today, I read this: Making Promises We Cannot Keep in the New York Times.  

Ok, I’ll stop.  For each downfall, there are equally amazing stories of resilence, and lengthy remissions.  I need to find those too.  Thanks for letting me vent. 

Nothing to do with cancer!

So, this has nothing to do with me, lymphoma, cancer, chemotherapy, drugs, costs or anything I've been writing about.  I have been tired and nauseous, but I liked this (on a friend's Facebook page).  So ...enjoy.  It's so cute.  

Tales from the Treatment Suite

2 DOWN!   4 TO GO!!!

This one was a bit rougher than the first infusion.  I did not have the insomnia, but rather felt more wiped out sooner.  My white blood cell count was below the low range (slightly), but Dr. Lufkin indicated it would be ok to do the infusion, but I might be a bit more tired this round.  He was right. One patient was sent home to return next Thursday – her white blood count was too low.   The treatment room was pretty empty this time, so it wasn't as lively as the first round;  only about 12 folks getting infusions on Thursday.  Friday, only 3 of us, but that one takes me about an hour only.  

I graduated to one large bag of Rituxan – still starting at 50 ml/hr for 30 minutes, then 100 ml/hr, then bumped up to 300, then 400.  I was  still there until 2:00 pm, starting at 8:30, so first day is the long one.   I had some air bubble trouble today, but the nurses are observant and right on it.  

Rebecca W-A came by and we had another nice visit.  This time though, her evil twin Jessica stayed home.     I found it funny that this was in one of the chairs when I arrived:

I guess there might be a rush on the premium seats!!

There was one newbie – I could tell he has either a non-hodgkins lymphoma or a type of leukemia b/c he was getting rituxan too.  They were doing it slowly, and explaining everything.  I felt very knowledgable and like a mother hen over him, as now I’m a seasoned veteran!!  There were two breast cancer folks, both receiving herceptin, one finished chemo today and got balloons.  She will have a double mastectomy on Halloween.  This is serious stuff.  

The instructions for the 48 hours post infusion are pretty serious.  I asked my oncologist about them, and he said it's probably overkill, but these are seriously toxic drugs.  

I went into a bit of a steroid rage on Friday;  turning bright red, feeling like I might explode, and ranting about Trump and all things irritating.  Hoping to calm down November 9th.  

That's all for now!  

2nd Infusion today and tomorrow!

Taking off in about 20 minutes!  Blood draw, oncologist, then back to the infusion suite!  Details later

Research Rocks!

These are the geniuses of medicine and research!

NY Times link:  Nobel Prize in Physiology or Medicine awarded for study of 'Self Eating' Cells

"Yoshinori Ohsumi, a Japanese cell biologist, was awarded the Nobel Prize in Physiology or Medicine on Monday for his discoveries on how cells recycle their content, a process known as autophagy, a Greek term for “self-eating.”

It’s a crucial process. During starvation, cells break down proteins and nonessential components and reuse them for energy. Cells also use autophagy to destroy invading viruses and bacteria, sending them off for recycling. And cells use autophagy to get rid of damaged structures. The process is thought to go awry in cancer, infectious diseases, immunological diseases and neurodegenerative disorders. Disruptions in autophagy are also thought to play a role in aging."

Videos! (Note: NOT available on Netflix)

Here are some videos that nicely show the internals (more skeletal stuff and lymph nodes - not gross, but kinda gross, kinda totally cool).

These videos are on YouTube (my private channel).  After they are done, you will see links to other videos I have nothing to do with.  If you want to see them again (they're short), hit the circle with an arrow in the lower left corner.

The first one is only 4 seconds, and is the CT scan that was done for the lymph node biopsy on 7/7/2016.   This shows the nodes in question as black lumps in the middle of my body.  The needle was inserted in my back between a couple of vertebrae to the lymph node on the top.  I think my brain looks quite dense.  (Although this could be taken a couple of different ways!).

 

The second video is 14 seconds, and is my PET scan done on 7/19/2016.  Here's a blurb on what the PET scan is:  

"During a PET/CT scan, the patient is first injected with a glucose (sugar) solution that contains a very small amount of radioactive material. The substance is absorbed by the particular organs or tissues being examined. The patient rests on a table and slides into a large tunnel-shaped scanner. The PET/CT scanner is then able to "see" damaged or cancerous cells where the glucose is being taken up (cancer cells often use more glucose than normal cells) and the rate at which the tumor is using the glucose (which can help determine the tumor grade). By combining information about the body's anatomy and metabolic function, a PET/CT scan provides a more detailed picture of cancerous tissues than either test does alone."

The cancerous lymph nodes light up in purple/orange/yellow at 0:06 and 0:07.  The other organs that uptake the radioactive glucose are the kidneys, brain, heart and bladder - these are your "most active" organs.  Once the dye was put in via a needle into my arm, I had to wait an hour to let it get into my system. The interesting thing was I had to rest in a dark room and not read or use my phone, or even think.  I was asked to not think.  Imagine that.  The radiologist wanted my brain to rest so it didn't light up so much.  Kind of fascinating, but I hope you never have to have a PET scan - they are mainly used to find cancer and other things wrong.  In this instance, I hope you live vicariously through my experience.