Light the Night Walk - LLS

On October 8th, this happening in Portland:

Joe and I will be at a wedding that day for our friends Natalie & Nic (and their lovely daughter River), but my oncology care team at Compass has a team walking.  Here is their blurb: 

"Compass Oncology will walk for a 17th year in Portland's Light the Night.

The Leukemia & Lymphoma Society's (LLS) Light The Night Walk helps support the research of blood cancer treatments that save lives, as well as other programs.

We are grateful for the support LLS provides patients including information, financial assistance, and help with other pressing needs. Please join our Compass Oncology team effort today by registering to walk or by making a donation 

http://pages.lightthenight.org/oswim/PortlndL16/compassoncology. 

Compass will celebrate our survivors, remember those lost to blood cancers and raise money for LLS at this event that starts at the Oregon Convention Center. An amazing fireworks show is planned. There is no registration fee to participate. 

We hope that you can join our team on October 8
.  If you donate $100.00 you will receive an Olive Garden dinner, LTN t-shirt and a lantern to carry during the walk.  Enjoy fireworks & entertainment along the noncompetitive walk." 

There is a Facebook page for this event, with many comments.  Some of the walkers are  folks who are survivors themselves, who are in remission or cured.  Some of the walkers are walking in remembrance of family or friends whom they've lost.  Some of the comments about those lost are so sad;  young people that were in remission and the cancer returned, without response to treatment.  Here is one that hit me hard:

"My dear 22 year old son Jeffrey was laid to rest yesterday from complications related to treatment for his ALL. Such a shock as he was in remission. We have asked all our friends and family to make a donation to LLS in his honor. We had planned to do the walk this year, but it will be too painful. Next year, we are in for sure."

I am feeling reasonably good, and sometimes forget that this is cancer.  I am so hopeful for remission, and know that my type of lymphoma will re-appear, who knows when?  I'm getting ahead of myself - one day at a time.  I first have to deal with this occurrence.  

One of the things you do when you have cancer is internet research.  This can be good or bad.  With cancer, you will inevitably find survival statistics.  For my cancer, there is the Follicular Lymphoma International Prognostic Index (Doctors have developed the Follicular Lymphoma International Prognostic Index (FLIPI) specifically for this type of lymphoma.)  

The study used to develop the FLIPI produced the following survival rates:

Risk group	5-year survival rate	10-year survival rate
Low-risk	91%	71%
Intermediate-risk	78%	51%
High-risk	53%	36%

I am in the low-risk group for now, so my stats are good, but this can change.  It is still a bit weird to even consider a table of survival rates.  But I could also get hit by a bus tomorrow.  In any case, it is occasionally good for one to contemplate one's own death, and figure out how to live...now...and each day.  This brings some sharp focus to one's life, for sure.   

So, here's to weddings, and walks, and life!  

As a Cancer (July 22), I like this:

  

Halloween's a Comin'

Hi there,
I have recently obtained some procedural images for my CT/PET scan and port placement X-rays. The body is a pretty cool thing!!!  Remember my power port?  It worked swell for the first infusion, and the oncology nurses' faces light up when they see I have one.  It makes their job easy and clean, and it is very comfortable for all.  I have mine, because after the 6 months of chemotherapy, I will have 2 years of rituxan infusions every two months.  It made sense to have this entry way for at least 2.5 years of injections.  Here it is up close.  (see left side - the faint triangle, then the tube which goes much farther into my superior vena cava vein than I thought) 

Rituxan is expensive (as we've seen), but more importantly it is a "monoclonal antibody"!  It is considered a "targeted" cancer therapy.  Antibodies are an integral part of your body's immune system. Normally, your body will create antibodies in response to an antigen (such as a protein or a germ) that has entered the body.  The antibodies attach to this foreign antigen in order to mark it for destruction by the immune system.  

These monoclonal antibodies (that are created in the lab by wonderful cancer researchers) find the specific protein marker, in this case the CD20 antigen on my normal and malignant B-cell lymphocytes, and "mark" them, and then my natural immune system will kill them - all of them.  My stem cells - young cells in the bone marrow - where the lymphocytes (and all blood/lymph cells) are made, do not have the CD20 antigen, so they are not killed, and this allows healthy B-cells to regenerate after each infusion.  

Pretty cool, eh?  I am grateful there are people that figure this stuff out, and have made a drug to mark these nasty cells.   

Mutual Admiration Society!

So…this blog post is about you all. 

I just now received an email from a friend, who was a work colleague until he retired (and is still missed and irreplaceable) in which he stated simply to me: 

“I’m following your blog.  You are awesome.  You will prevail.”

So kind.  So many people have helped in so many ways.  Delicious food prepared with love.  Garden abundance shared.  Supportive cards. Encouraging words.  Beautiful flowers.  Silly jokes.  Visits.  Walks.  Even offers of stem cells and/or bone marrow. 

Mutual admiration society it is, without the exaggeration or pretense!

(mutual admiration society ‎(plural mutual admiration societies) (idiomatic) A group of  two or more people, in a workplace or other social environment, who routinely express considerable esteem and support for one another, sometimes to the point of exaggeration or pretense.)

You have all been so supportive and positive.  And I just want to thank you.  When it was obvious that something more was seriously wrong, and my diagnosis was cancer and chemo, I was terrified.  I so appreciate going through this with you.  I appreciate that you're even interested in reading this blog.  It initially felt a bit narcissistic, but I do believe it is the easiest way to update a central portal.  So...thanks for reading.  Thanks for being there.  

"God's dream is that you and I and all of us will realize that we are family, that we are made for togetherness, for goodness, and for compassion." ~Desmond Tutu

Business end of things

You know how you go to the doctor for an appointment or some treatment, and you sign the box?    When you inquire about what exactly you are signing, they tell you something like "consent to treat and to bill insurance".  You have your appointment/procedure/test, then you get some paperwork in the mail.  You may pay a co-pay of $5.00 or $20.00 or whatever your plan is.  

The business side of cancer is one that is very remarkable.  I have signed a million things, actually never once questioning my treatment plan or what I would be charged.  Thank God for insurance, eh?  So I googled the cost of Rituxan and Bendamustine.  Here's what I found out:

Bendeka  

Blink Price

$18,219.40

With promo: $18,214.40

Bendamustine hcl 25 mg/ml, 30 Milliliters

This medication is used to treat certain types of cancer (e.g.

Rituxan  

The portion which my insurance paid for the Rituxan itself was 

consistently around $9,850. The average cost of one complete 

round of treatment (two infusions) was $22,516.

I went to Compass Oncology on Tuesday morning to sign some more papers, and just asked the financial aid person if those prices were real.  She informed me that my insurance will be 

billed $31,000 for the first day of chemo, and $11,000 for the second day.  Each round.  I have a total of 6 rounds of chemo.  You do the math.  If you don't have insurance, you're screwed.  Or sick.

I would like to believe that there are programs for those who can't afford their medicine, and I think there are.  Amazing.  Feeling grateful...and just a little bit pissed off.  Certainly conflicted about the high cost of necessary, life-saving medicines.  Glad to have access to them;  upset many don't...

Funny Correction

So, I am going to work 4 hours a day, and feeling pretty good.  But then I get tired.  In my blog post entitled "Chemo-sabe", I had indicated that both Joe and "Jessica" were there with me.  I don't know who Jessica W-A is?  I do know who Rebecca W-A is, and she was there.  Odd...very odd.  Maybe a perfect example of what one refers to as "chemo-brain"???   This could be convenient in the coming months...

week one

Hi there,
I've missed you.  I've been tired.  :)  I am overall doing ok;  going to work 4 hours each day.  Some nausea, not horrible.  Fatigue...yes.  Sleep...good.  I do have some thoughts on future blog entries including movies that will nicely visually represent the cell war going on in my body, and the high, high cost of medical care and specialty drugs.  Those are next in the queue.  

I do love this fall weather - slightly chilly mornings;  sunny, warm afternoons, beautiful sunlit  color.  And football!  (but I'm not discussing the Bears!) And baseball!  

So, I have been a lifelong Chicago Cubs fan - 5 years old (1969) @ Wrigley field with Ernie Banks (Mr. Cub!) and my parents let me have not one, but two of those chocolate malt ice cream cups;  you know, the ones in the paper cups with the little wooden spoons.  Heaven indeed.  

Fast forward to 2003.  Cubs finally in the playoffs.  My parents (of choco malt fame and so much more) had both died in March 2003, and I moved to Pendleton, OR in April 2003, and was in a fog most of the time.  We watch the cubs in October 2003 collapse under that damn Bartman catch (I probably would have done the same; don't blame him).    Heartbroken.

2016 - is this the year??  Cubs the favorite to win the 2016 world series

Chemo-Sabe (borrowed with “thanks” from Susan Drake!)

1 DOWN - 5 TO GO!!

So, I'm done with my first treatment.  To pick up where I left off, after the first bendamustine bag yesterday, I then received my rituxan.  They metered this in slowly in 50 ml/hr increments.  Starting at 50 ml/hr for 30 minutes, the nurses were taking extreme care watching that I was tolerating it (i.e not turning red, getting nauseous, having a cortisol hot flush).  Those symptoms would indicate too many dead cancer cells were overwhelming my kidneys.  I did fine at that dose, so the rituxan was given at 50 - 100 - 150 - 200 ml/hr each for 30 minutes.  We took a 20 minute break, as I had some minor symptoms, but the nurses are so careful and attentive, we just did the saline drip and let me recover.    Then restarted at 200 - 250 - 300 ml/hr until both bags were done.  Maximum flow rate is 400 ml/hr, but I ran out of drugs before that injection rate!  Phew!  Next infusions will start at 250 and range up to 400 since I apparently did pretty well, so they should be shorter, but I still have to come back day 2 for bendamustine.  

Joe was there at the beginning and the end, and Jessica W-A came by around 1:00 - we all had a pleasant visit while my drip was dripping.  So nice.  Because I was there so long, I saw about 30 patients come and go with their various cancers and chemo cocktails.  I was so pleasantly surprised.  It’s not a depressing place at all!  People are lively and engaged, and because I’m a newbie, I got a lot of encouragement and reassurance.  The Medical staff (i.e. doctors and nurses) are all super kind and attentive, as is the admin staff (financial aid folks, schedulers, check in people).   Some of the patients were obviously very sick and struggling, but everyone is treated so well, and we all are cheering for each other.  Not a club I wanted to join, but I have great veneration for my club-mates.  

So today, I went back and had about a 1/2 hour long 2nd bag of bendamustine. 

  
Then I went home and crashed.  Only for a bit.  It's those damn steroids.  I hope to sleep tonight.  

First day Chemo update

Oddly enough, I have insomnia (it’s 3:33 am), so I’m blogging my first day impressions.

Arrived at 8:45 am – late because of Portland traffic!!!  (which is rivaling LA’s now, btw). 

Had the ubiquitous blood draw, then met with my really awesome, really chill Dr. Robert Lufkin.  He is laid back, knowledgeable, compassionate and willing to answer all my questions.  Compass Oncology has an online patient portal and I have my own MyCare account, so they have been getting bombarded with questions/concerns, for which they have provided answers, reassurances and patience. 

Then back to the infusion suite. It’s a busy, lively place.  My infusions were to take 6-7 hours, and the norm is 1-3 hours.  Apparently my drug cocktail gets infused slowly, as they want to monitor reaction and my cell die-off, which can overwhelm the kidneys.  So, when I started the infusion at around 10:00 am, There were 7 people getting infusions  - my nearest neighbor was getting arsenic for leukemia! 

I also found out that my infusions are each 2 days, I guess in the spirit of the slow delivery. Thursday, I first received what they call the pre-meds, which are for anti-nausea and anti-inflammation. These were each in their own bag, given one by one (dexamethasone, diphenhydramine hcl and aloxi).

Then I received the first bag of bendamustine.  The second bag is given 24 hours later, and mercifully I get to go home in between.  Bag 2 tomorrow.  

I'll end this (as now, I am actually getting sleepy) that overall it was so much better than I thought.  I feel ok, a little weird (some minor nausea and this stupid insomnia).  I had been warned that one of the steroids (pre-meds) was going to make me feel like Superwoman, then I'd crash.  So I'm kind of waiting for the crash.  I'll also tell you my surprises.