Clinical Trial Day #8

We arrived at Hopkins by about 8:30 this morning for a 9AM appointment with Ellen, the clinical trial nurse.  When 10:00 had come and gone, I started to nudge Dave to call or email her in case she had forgotten that he had an appointment this morning.  In our other dealings with Ellen, we have noticed that she can be a bit scatterbrained.  Dave was convinced that she was probably just running behind schedule and told me that I was stressing him out.  One of our friends from the retreat arrived shortly after that so we passed the time listening to his very entertaining stories.  He is just a great person – so optimistic in his tenth year of dealing with colon cancer.  At about 10:30, Ellen wandered through the waiting room and I kid you not, looked absolutely surprised to see us.  She asked me if we were waiting to meet with her.  (sigh)  To her credit, she is a caring and personable nurse but seems to be completely lacking in any kind of organization.  She needed to consult with another patient but returned about twenty minutes or so later and took us up to the chemo suite and met with us there.

Dave’s lab results look great overall.  His blood counts are within the normal range.  His liver function results were high but that is not unexpected with the disease, surgeries and Sirspheres treatment he has had.  She explained that they are seeing side effects from the SGI (trial drug) starting around day 10.  She also warned that so far, all the other patients have experienced delays in the administration of the day 15 Irinotecan due to blood counts being too low.  So, we will see what happens.  He is already feeling a little stomach distress and nausea so headed to bed pretty early tonight.  I am thankful that he was able to have the infusion today.

Just so you don’t think it’s all heavy, deep and real around here, I just wanted to mention that we have had a really relaxing winter break so far.  We are lucky enough to have a full two weeks off of school because Christmas and New Year’s Day fell on Wednesdays this year.  The first few days were busy with the shopping, wrapping, more shopping, and the more wrapping that precedes Christmas.  We celebrated early with Dave’s sister and her family.  It is always nice to get the 7 cousins together, and Kris and Franck made the yummiest lasagna I’ve ever tasted.  The kids slept in Christmas morning so we opened presents leisurely and enjoyed the slower pace that comes with having kids that are getting older.  As much as they enjoyed being on the receiving end of things, they also enjoyed giving gifts this year too.  Parker’s were handmade, many on the rainbow loom.  Grant and Samantha hit the mall and found treasures at the “As Seen on TV” store as well as some other shops.  In the afternoon, we headed over to my parents to exchange more gifts and enjoy some of Grammy’s yummy cooking.  The day felt just right all around.

Dave and I went to see the movie, Her.  It is so thought provoking and beautifully filmed.  I believe that Spike Jonze is a genius.  Definitely put it on your list of movies to see.  The kids have had friends over.  In fact, Grant’s friend, Sean, is with us until Thursday.  I’ve checked things off my to-do list like cleaning out the car, undecorating from Christmas, helping Parker sort out her room.  I even went into work to feed the snake and got my desk there organized.  I’ve spent time catching up with friends which has been nourishment for my soul.  We are also planning on getting away for a few days before school starts back up on Monday.  Originally, we thought NYC would be fun, but after seeing the FRIGID temperatures in the forecast, we are rethinking that idea!

I hope that 2014 brings you ALL that you need and at least some of what you want!  Happy New Year!

xoxo,

Robyn

PS In no particular order, here are some of my favorite Christmas gifts this year.Image

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Chemo Day

Dave has his own routines and preparations for chemo days.  He makes sure his Nook (now his Kindle Paperwhite) is charged up and ready to read.  He packs bottled water, snacks and his insulin and meter.  After he showers, he uses a lidocain cream on his port which numbs the skin so when it is “accessed” he doesn’t feel any discomfort.  The bulk of his preparation is mental though, I’d say.  Understandably he is usually a little grumpy the morning of or even the day before chemo.  He has to brace himself and get himself psyched up for another round of feeling crappy.  I don’t know how he does it.

I don’t routinely go with him on chemo days.  When he starts a new medication, I will usually go just in case he has an adverse reaction which would make driving home unsafe or challenging.  Although he has been on Irinotecan before, I am going today because it is a much longer drive home and we don’t know how quickly or strongly he might react this time around.  I have my own little things that I do when I go with him to appointments.  I don’t wear my normal perfume or any kind of scented lotion.  If your stomach is already queasy, the last thing you want to do is have to sit next to someone wearing a strong scent.  I pack mints and bottled water ever aware of morning coffee breath.  There is one involuntary response that I have that I can’t seem to avoid.  Whenever I am in a situation that requires quiet, like a concert or speech or sitting in a doctor’s office, inevitably I will begin to cough.  Nothing brings on a cough faster than being in a waiting room with the sign that reads “If you are ill, please see the receptionist for a mask or reschedule your appointment”.  I will be as healthy as a horse and that cough comes on.  I am sure it is stress.  The last thing I would want to do in a room full of immunocompromised people would be to spread germs.  I don’t blame them for giving me the stink eye.  So, today armed with assorted candies and drinks, I am hoping to stave off the nervous cough.

I’ll let you know how today’s treatment goes.  Here’s hoping to stopping those numbers from rising and stomping those tumors back into place.

xoxo,

Robyn

Numbers Game

Dave’s CEA number has been steadily creeping up.

October 14th – 22

November 15th – 49

December 11th – 150.5

December 23rd – 201.6

He has gone up to Hopkins 5 days out of the last 7 for his clinical trial drug injection.  This drug is supposed to decrease his resistance to Irinotecan, a proven colon cancer chemotherapy drug.  Tomorrow he gets an infusion of Irinotecan and as long as his blood counts stay up, he will get another infusion the following Monday too.  I am anxious for him to get back on tumor fighting meds as soon as possible.

xoxo

Robyn

5 Christmas-y Thankful Things

1. By some miracle the gifts have all been bought and wrapped.  The shoppings gods were smiling on us Saturday because we encountered manageable lines and found all the items for which we were looking.  Woohoo!  (Although this is the first year that I can remember that one of the kids is not getting their #1 wish list item.  I am hoping the surprise gift will soften the blow!)

2. Dave has a new set of wheels for the many many trips to Baltimore that he will be making while on the clinical trial.  He really wanted a hybrid and picked out the Subaru Crosstrek in bright lime green.  We are affectionately calling it the “snot bubble”.  I will be much less stressed knowing that he is in a safe and reliable car as he journeys to Johns Hopkins.

3. The gifted minds and hands of the doctors and nurses who are treating Dave.  And especially for the ones who also practice medicine with their hearts and souls.

4. The five of us together.  It is nice to have a full house once again.  I am also enjoying having the kids’ friends over contributing to the hilarity and energy here.

5. Friends and family.  Friends and family.  Friends and family.

Merry Christmas.

Love,

Robyn

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A Right, Not a Privilege

I was looking something up on our Carefirst member portal when I came across this –

Calendar Year To Date Claims Paid Jan 01, 2013 – Dec 31, 2013 $264,759.06

This is the negotiated amount Carefirst paid on our behalf this year.  I can’t begin to imagine what the actual billed total must be.  I am so thankful that we have excellent health insurance.  No matter what our copays or coinsurance amounts, they pale in comparison to the exorbitant cost of treating cancer.   I believe that everyone should have health insurance.  Hopefully like your car or home owners insurance, you will never need it for anything catastrophic.  I certainly never thought we would need it to this degree.

xoxo

Robyn

Another Day, Another Adventure

ImageI spent a decent part of my morning staring at images of Dave’s liver.  The radiologist and ultrasound tech were having difficulty determining what might be live tumor and what were areas that had previously been treated either surgically or with the Sirspheres.  As the doctor put it, “We can see that it is abnormal tissue.  We are just not sure what makes it abnormal.”  Eventually they brought in a second ultrasound technician and more equipment.  This additional equipment allowed them to import Dave’s latest CT scan onto the screen, so that as they moved the transducer around, the CT images would also shift allowing them a comparison to what they were seeing via ultrasound.  I don’t mean to brag but I was able to see Darth Vader, a horseshoe crab and The Grimace in there. 

There were a lot of people in the small room.  There was someone from “research” who arrived with two styrofoam boxes in which to carry the biopsy samples.  She spent much of her time pacing in the hallway.  There were three doctors from pathology who were ready to look at the samples under the microscope to determine if they were adequate.  There were two radiologists to do the actual biopsy, two ultrasound techs and a nurse.  Oh, and me.  I was in there.  Once a promising area was located via ultrasound, they were ready to go.  Dave was given preemptive Oxycodone as the procedure promised to be pretty uncomfortable.  They also numbed his skin via injection.  As the big needles were coming out, I got nervous and excused myself out into the hallway.  I couldn’t believe that no one asked me to leave. I kept waiting for my exit cue, but it never came.  

I sat in the waiting room and sent a few texts and responded to email.  A very short while later, I saw the doctor? from research walk by with her styrofoam boxes.  I figured they must be done and was amazed at how quickly they were able to finish up.  Minutes later I found out why.  Apparently they tried to approach the tumor location from one angle closer to Dave’s belly button but they weren’t able to get to the spot.  So they tried again from his side – between two ribs.  This caused Dave to yell out in pain.  At that point, they determined that they would not be able to do the biopsy.  The radiologist explained to Dave that because it was for a clinical trial they were not going to put him through all of that pain to get the tumor sample.  If it were a procedure he needed, they would have pressed on.  

Our understanding of the clinical trial was that in order to be eligible a biopsy had to be attempted.  If it was not successful that would be okay.  We weren’t entirely sure if what was done today would count.  On the drive home, Dave got an email from Dr. A reassuring him that they would still be able to move forward with the trial.  So our little story had a happy ending.

xoxo

Robyn