All’s Quiet in the Western Suburbs

Dave had a scan on Monday.  Unfortunately his oncologist is out of town.  But because Dr. Spira is a caring doctor, he got a look at the scan report and emailed Dave.  In a nutshell he said, “The progression of cancer growth is minimal although clear.”  Disappointing but not altogether surprising since Dave was off of chemo for almost six weeks.  The plan is to add Avastin back to the mix this week and hope that stops the tumor growth.  

xoxo

Robyn

Inspiration and Eggs Benedict

ImageRemember the five other couples we met at the Johns Hopkins retreat?  (https://embracingtherollercoaster.wordpress.com/2012/10/08/the-couples)  We met up with two of the couples today for brunch.  I was equal parts looking forward to it and dreading it.  I find that I don’t really like to expose myself to anything that might permeate the bubble in which I choose to live.  We sat and chatted and brunched and caught up.  Two hours flew by in the blink of an eye.

D, the oldest member of our group, had noticeably lost weight.  He was in the hospital in December for pleurisy.  Turns out for the last three years, he has had cancer related challenges around his birthday.  This year was no different.  He has a tumor on his back which has started to grow and so he is now back on a chemo regimen that he swore he would never do again because the side effects are so awful.

J, the only female patient in our group, looked great.  I thought she looked even more lovely than when we met her in October.  She revealed that her last two scans were not good.  She has been through lots of different chemo regimens many of which stopped working.  She said she is hopeful that this one will make a difference for her.  When she hugged me goodbye she got very teary eyed and emotional.  It made me worry about how “not good” her scans are.

Once again, I was humbled and reminded that while we may find our path challenging and tiring, there are others out there who are forging ahead through so much more.  They are doing so with grace and humor and tenacity.

xoxo

Robyn

The Latest Scoop

ImageToday we went to see Dr. Spira to discuss Dave’s chemo treatments.  We are all in agreement that it makes sense to go off of the trial.  Basically, if he stays on the trial, he would 1) have to have a scan that shows no tumor growth while he was off and 2) he wouldn’t be able to resume any treatment until the end of January.  The drug trial protocol is pretty strict.  Instead, he will restart his folfiri regimen which is what he has been on since May.  Once he is fully healed, he will add Avastin back to the mix.  Avastin works in a very similar way to Ramucirumab (trial drug) but is already approved.  In fact, he was on Avastin during his first line of chemotherapy last year.  It was thought that Avastin isn’t effective in second line treatment but more evidence is changing that way of thinking.  I continue to believe that we are in the right hands and the decisions we are making are the only ones that make sense.

xoxo

Robyn

Staying the Course

Image“Hi Dave,

So the scan was fine.. Ill call you later regarding the possibilities.  One spot a mm or two bigger, another smaller, all of which we call in the standard error of measurement of the scan (think romney obama 51 49 but the error is +/-5 points), so the same and all dead tumor spots, which is good and perfect in my regards. I will call you later today between stuff I have to do at the hospital and voting.”

 

Dave got this email yesterday from his doctor.  It is essentially what we have been seeing over the last couple of scans – stable disease.  The “all dead tumor spots” was new information and got our hopes up that a chemo break might be possible.  When Dr. S. called Dave later in the evening, he said that he still has live tumor cells in his body.  Armed with this information and the fact that he can’t continue the drug trial unless he stays the course, Dave has decided to continue his full chemo regimen for now.  

Dave’s wonderful sister, Kris, went with him to his appointment today since I was stuck in a day long training for our Title I program.  She and I brainstormed a bunch of questions about taking a chemo break, maintenance chemo and staying on the current treatment plan.  It is so valuable to have as much information from as many different experts as possible because in all likelihood, Dave is going to NEED a break from all of this.  He is also going to consult with the doctor he saw at Johns Hopkins to get her opinion too.  

For now, we keep chugging along.  I am one part relieved that the protocol that is working for Dave is going to continue, and I am two parts disappointed for Dave that he doesn’t get to have that normalcy he wants so much.

xoxo

Robyn

 

 

A New Friend

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Yesterday I met up with a friend of a friend for a late afternoon coffee/snack date.  My friend, Lori, connected me with her friend, J, when J was diagnosed with breast cancer earlier this year.  We have exchanged messages here and there, but it was so nice to finally meet her in person.  I am awed by J’s strength and resilience.  Hers is not an easy path, but she seems to be handling it with so much fortitude and grace.

We talked about her cancer.  We talked about Dave’s cancer.  We talked about how very hard it is to ask others for help.  We talked about parents and their roles in the journey.  Eventually we talked about the big decision Dave is faced with this week – whether to continue chemo, take a break or go on a lesser chemo regimen.  It was so good to hear her perspective as someone going through the trials of chemo.  It is easy for me to get caught up in what I think is best, but it was so vital for me to hear from her how much a cancer patient longs for normalcy.  How great it would be to taste things normally or not feel neuropathy or not have the bad days that follow each infusion.

Dave has his scan tomorrow and then will likely talk to Dr. S at some point later in the day.  I know that he will make the best decision for himself and for our family.  After all, at every twist and turn on this journey, he has done exactly that.

xoxo

Robyn

PS J also delivered a t-shirt from Lori for Dave.  He will be modeling it this weekend at a gathering.  Pictures to follow.  :

Anatomy of a Doctor’s Appointment

Aside

We drive separately since Dave has to go to work afterwards.  (why is it always so hard to find parking in this garage?)  He heads to the lab for blood work, and I make myself comfortable in the waiting room.  (hmm…Life With Cancer pamphlet….could be interesting.  FINAL CHECK LIST.  eessh.  i definitely don’t need to read that.)  Dave gets called back – weight check, blood pressure check (that was quick. did she really take it?), pulse, temperature, standard list of questions about appetite and symptoms.  (click, click, click on the computer.  she isn’t even looking at us.  has to get through her checklist of things to do.  SO routine for her.)  We wait.  I remind myself to breathe while at the same time ignoring subtle stress-induced digs from Dave.

Dr. S comes in.  He is a whirlwind of energy.  He is noticeably surprised to see me and comments that I usually am “only here for the big appointments”.  (so want to defend myself.  dave doesn’t want me to come to all of his appointments.  i have to work.  do other spouses come to every appointment?  am i not keeping up?  do you know how supportive i am?!)  Dr. S tells Dave that his blood work looks good.  His numbers are good.  CEA is 3.4.  Dr. S pokes and prods a bit and asks about side effects.  Dave tells him his concerns about “chemo brain”.  That he is getting increasingly forgetful and aggressive.  Conversation moves on to discussion about what we are going to do after the 12th cycle of this chemo.  After some questioning, Dr. S tells us Dave can choose to take a break altogether (alarm bells.  this is a terrible idea.)  or he can do a lesser chemo but we will talk about it after the next scan.  Dave reminds Dr. S that he is going to be out of the office after the next scan.  Chit chat about where he is going to be.  I ask a few questions about going off the trial if Dave takes a break.  Dr. S mentions that we don’t have to decide today.  I ask about taking a break from chemo, and Dr. S says that obviously we know Dave’s tumor is aggressive but that it is up to him if he feels he needs the mental and physical break.  (no, no, no, no, no.  easy for me to say.)  Then it is handshakes all around, a few jokes about the kids, and we are out the door.  As I am driving to meet some friends for lunch, I wonder what we really learned today.

xoxo

Robyn

Saturdays May Never Be the Same

Dave had chemo last week.  By Saturday he felt awful.  Fatigue and stomach malaise were the biggest issues.  He was grumpy and short tempered.  This seems to be the day he feels at his absolute worst after infusion.  Then each successive day seems to get a little bit better.  He starts to feel almost completely back to normal by about Tuesday of the week following treatment.

The Saturdays of the weeks he doesn’t have chemo are not much better.  He is anxious and stressed.  I can’t begin to imagine how challenging it must be to finally feel better and then have to gear up to do it all again.  So we stay busy.  We make plans and find things to look forward to.  This is our new normal, and we are starting to get the hang of it.

xoxo

Robyn