The Grapevine

 

Yesterday I was knee deep in third grade chaos when my colleague, Elizabeth, told me my phone was buzzing.  I never answer my phone when I have kids in the classroom, but I took a quick glance at the number and knew it was one of my kids’ schools.  I was pretty sure it was Parker’s which naturally made me think she must be in the clinic.  So despite the ill timing of trying to get a class cleaned up and out the door, I answered.   With my attention diverted the third graders got louder so I attempted to hear the person on the other end through the din.  

“crackle, mumble, South Lakes High School”

Okay.  Grant must be in the clinic.

“buzz, laughter, static, Kim”

Crap.  It’s the principal.  What did Grant do?

Turns out the principal of Grant’s high school was calling because she wanted to check on Dave.  (I ended up calling her back after my third grade friends left.) Apparently the rumor mill has been up and running among leadership in the county.  She decided the best approach would be to contact me directly.  And I really appreciated that.  So I told her some things that ended up being good reminders for me and Dave too.

1) Yes, the clinical trial at Hopkins didn’t work out.  This means the drug didn’t work for Dave.  But he continues to have other options and as long as he has options, we are hopeful.

2) Dave currently has a fraction of the amount of cancer in his body that he had when he was diagnosed.  He did have tumor growth but all of his tumors are still quite small.

3) Dave was unable to work consistently during the trial because he was driving up to Baltimore regularly.  He is hoping to get back into the swing of things as much as the new trial allows. 

4) We really appreciate everyone’s good thoughts and support.

xoxo,

Robyn

 

 

The Cheese Stands Alone

 

I greatly dislike the term “caregiver”.  I am not sure why it irritates me so.  Maybe because I don’t feel like I am giving care.  Or perhaps because it sounds like one person is helpless and needs the other’s help.  Just please don’t refer to me as such as it does bother me. 

Being the partner of someone who is ill is definitely not without challenges.  One of the biggest ones that I face is when to push and when to back off.  This normally relates to Dave going to work.  For the last couple of months, I have not pushed – maybe an occasionally nudge every once in a while.  As I mentioned previously, being in the clinical trial made it almost impossible for Dave to gain any kind of momentum at work.  Now he is way out of the routine.  In my estimation this seemed like a good week to make an effort to go as Dave has been off treatment for three weeks and has not started the new trial.  Yesterday from work I sent Dave a text that said something like “How’s it going?”  This was my way of gently nudging him to get going.  Eventually he did go in, after the building had emptied for the day, and spent a few hours catching up on email and paperwork.  This morning as I was leaving to spend time with my brother and his family I said “What’s your plan for today?”   Another gentle nudge to encourage him to get on with the day.  When I returned home several hours later, he was still here.  

I have reached out to Dave’s family and friends over the last few years when I have encountered a situation like this in which I could use some backing.  Usually, it doesn’t really help.  I think sometimes friends don’t want to get involved because they feel it might compromise their relationship with Dave, or maybe the don’t agree with what I am trying to do, or it could be that they can’t fully understand because Dave seems/sounds great.  Dave’s family has been very supportive.  His parents have gone with us to quite a few appointments to be another set of listening ears and advisors.  His sister was with him on his toughest treatment day to date.  And his brother has been generous beyond words with his time and the experiences and things he has done for Dave.  (I think he would be embarrassed if I listed them here.)  But even his family can’t do much to assist in these situations.  Dave tells them what he wants them to know or what he thinks they can hear.  He doesn’t want to put undue stress on anyone.  I hear him on the phone quickly change the subject if it lingers too long on cancer talk.  Over time I have come to realize that I am the one who has the tough conversations with him.

When I walked in the door today to find Dave still home, I took a deep breath and asked him these questions – 

What is your big picture plan?

Are you waiting for someone to make the decision about your job for you?  Lack of a decision is also a choice.

Are you planning to sit at home and wait for your tumors to grow?

Are you trying to avoid seeing people at work?

Dave’s reasons for not going to work are generally fatigue or pain.  He says he has trouble sleeping at night.  I told him that the reason I think he has trouble sleeping at night is because he is inactive and sleeping during the day.  That it concerns me greatly that he has checked out of a major part of his life.  That I don’t think he is trying to get up and get going.  That changing his routine might help him sleep better and feel more energized during the day.

These conversations are tough.  Dave gets irritated with me and feels that I don’t understand.  He feels that he is trying.  I wonder myself what my motivation is for pushing him to go to work.  At the moment it is not financial thanks to sick leave and short term disability.  Is it my selfish need for things around here to be somewhat normal?  Do I worry that he is giving up?  Am I concerned that his decision to work will be taken out his hands?  Probably a combination of all.  

He says he will try to go to work tomorrow.  I won’t be home to nudge and prod so we will see.  I am hopeful that our discussion made a difference.  

xoxo,

Robyn

Operation Puppy

(The following is not supposed to be a tale of woe or a cry for help.  It is just supposed to be a snapshot into our swirly existence.)

To quote our friend, Doug, who has a puppy story of his own, “Operation Puppy was an unmitigated disaster.”

Dave has only been able to go to work for a few hours here and there since the Hopkins clinical trial started.  Between driving up to Baltimore and feeling crappy, it just hasn’t been possible.  Last week we both came down with colds so he spent most of the week laying low.  Thursday night I gently encouraged him to get out of the house and go into school for a few hours on Friday.  I suspected he wouldn’t because I wouldn’t be there in the morning to push.  Sure enough around noon on Friday I got a text saying that he was not going to go into work, but because the cleaning ladies were coming, he was going to go to the Y to sit in the sauna.  I texted back to say I understood but that I did feel he needed to push himself to go to work on Monday to “reengage the old thinker” and that I didn’t want to see him “checking out from everyday life”.

Right before my 6th grade class arrived, I noticed another text from Dave on my phone.  This text said that he had bailed on the Y, gone to a local pet store, negotiated with the guy on a corgi and he was going to “pull the trigger”.  He ended by saying that he would return the puppy before Parker got home from school if I was against it.  My response was “NO NO NO”.  When I didn’t get an answer, I decided that I had better call.  When Dave picked up he was on his way to the vet to “get the puppy checked out.”  I told him he needed to return the puppy immediately – that he was behaving selfishly and I was totally against it.  I could barely concentrate as I got through the sixth grade class.  When they left, I talked to my friends and colleagues, Linda and Sue.  It was when I started to verbalize how I was feeling that an overwhelming feeling of exhaustion hit me.  Suddenly, I felt the weight of all the stress that I have been carrying around come crashing down on my shoulders.  Linda and Sue were both so supportive and reasonable and reassuring.  I cried, which I hate to do, especially at work.  But I literally was so angry and tired and frustrated that i couldn’t hold it in.  How could Dave ask me to do one more thing?

I called him as I was driving home silently praying that he had returned the dog.  We had a conversation that was full of silences (his) and hysterics (mine).  What I wanted to say was this –

I get up every morning at 6AM.  It doesn’t matter if I am tired or not feeling well.  If Grant has to be up that early, I feel that the least I can do is see him off with a decent breakfast.  Then Parker and I get ready, I drop her off at school and then I head to work.  After work I pick up prescriptions, or groceries, or run errands, or take Parker to oboe or pick her up from play practice.  This week also included the adventure of going to the DMV for Grant’s driver’s permit test and dealing with phone calls and paperwork to get Sam into the OI clinic.  When I walk in the door there are usually dishes in the sink and laundry to be done and mail to be sorted through.  Then there is dinner to be made and homework to be done.  And I don’t mind.  I feel that the least I can do is take care of the house and family stuff so you can concentrate on feeling better.  But did you consider for a moment how I would feel about having another responsibility put on my shoulders?  Because realistically, it is going to be me outside with a puppy every hour in the snow covered grass.  It is going to be me watching the puppy to make sure that he doesn’t chew furniture or shoes or cords.  I don’t have an ounce of energy to dedicate to anything else.

What I did say was this –

Your actions are incredibly selfish.  I am exhausted and broken and have nothing left to give.  I have a big threshold of what I will put up with but I also have a limit.  You have reached and crossed that line.  When I asked you to return the puppy you went to the vet instead.  I have been there for you every minute of every day since this journey began, and I want to be there.  But you can’t have it all.  I know you are scared but this is not the way to handle it.

I passed the turn for home and drove to my parents instead.  Grant texted me to tell me that “Dad got a dog.  A sudden wave of stress has flown over me.”  I told Grant that I understood and that I had told Dad to return the puppy.  I don’t know what happened when Parker got home but I can imagine that it wasn’t good.  Dave texted me to say that she wasn’t able to get excited over the puppy and wondered if I had said anything to Grant.  I took a screen shot of our conversation and texted it to him.  Parker was upset, of course – to have something given and taken away within the same moment just wasn’t fair.

In the end, the puppy was returned.  The store does not ordinarily do anything but give store credit towards another puppy or kitten but Dave must have said something convincing.  And he felt terrible for what he had put us all through.  I have no doubt that Dave thought he was doing something fun and memorable for the family.  I believe he thought it would be a big bonding time for him and Parker.  Ultimately though he realized that shutting out his partner was not the right move.

We move forward and the situation did spark conversations that might not otherwise have happened so it was not all for naught.  These are stressful and uncertain times but the one thing we both need to be able to count on is each other.  And I believe we can.

xoxo,

Robyn

House Call

Dave heard from his doctor at Johns Hopkins yesterday.  She called to let him know that he was officially out of the trial.  This makes sense because it clearly wasn’t working.  She took time to answer questions that Dave had about his scan and let him know that they may have some trials for him.

Today we met with Dave’s local oncologist.  He told us about a phase II trial that is available to Dave based on the genomic testing that he had done previously.  That testing showed that Dave’s tumor has a P13K activated pathway.  This pathway is known to be involved in cell growth and tumor survival.  The trial drug is being tested to see if it will block the activity on that pathway.  (At least I think that is what it all means.)  We also talked about radiation treatment.  This would be done as a palliative measure if Dave has pain from his tumors.  I asked about conventional approved treatment options.  Dr. S. told us we were essentially out of those.  There is one FDA approved drug that Dave hasn’t tried but Dr. S. said he was “underwhelmed” by its efficacy and felt that only one of his patients had seen any benefit from it.  So, we are back on the drug trial train.

After the appointment, Dave went home to lie down and I went to pick Parker up from play rehearsal and hit the grocery store.  While I was out, Dave got a phone call from Dr. S.  It turns out that the trial was closing to new colon cancer patients tonight.  So, in order for a spot to be available for Dave, the consent forms had to be signed.  Tonight.  So, Dr. S. made a house call.  He came over to our house on his way home from work.  He told Dave he has NEVER done that before.  I am relieved to be back in the care of Virginia Cancer Specialists.  I appreciate all that Hopkins tried to do for Dave, but I am grateful for the organization, short wait times and, most importantly, personalized care that Dave gets here.

xoxo,

Robyn

Hope Floats

I don’t know if I love the movie Hope Floats because of Harry Connick Jr. or if I love Harry Connick Jr. because of the movie.  Either way, if I am flipping through the channels and it is on, I stop and watch.  Every time.  There is a line in the movie about giving hope a chance to float up.

We spent today at Johns Hopkins.  Dave was due to start round 3 of the clinical trial.  He had labs and a CT scan done before meeting with one of the doctors.  She did not have good news for us.  The scan showed growth of previously measured tumors, growth of new tumors, tumors in lymph nodes that we didn’t remember hearing about before.  The words “innumerable tumors” were used in reference to his lungs.  All around a sucker punch to the gut.  Completely unexpected.  On the drive home we both commented how we expected to hear works like “stable” and “some shrinkage”.  What this means is that Dave did not start round 3 of treatment today.  Tomorrow they will look over all the measurements, but in all likelihood Dave will no longer be eligible for the trial because it is not working for him.  So, we will start looking at other options – another trial, something connected to the genomic testing Dave had done, or perhaps a conventional line of treatment.  We will let hope float up to take the place of utter disappointment.

After the letdown of Samantha’s appointment on Friday, with a few clicks of the mouse I found a potentially encouraging opportunity.  Right down the road from the cancer center is the Kennedy Krieger Institute which houses the Osteogenesis Imperfecta Clinic.  I spent twenty minutes on the phone with an intake specialist today and have already received appointment paperwork for Samantha to complete before her appointment.  I am so optimistic that they will have therapies or suggestions that are going to make her current situation more bearable and also help her in the future.  They have a multidisciplinary approach that involves an orthopedic surgeon, an endocrinologist, a radiologist and a physical therapist.  I am excited to have an expert team take a look at my girl.

Tomorrow we will talk to the doctors at Hopkins as well as Dave’s oncologist here.  Together I know that we will come up with a plan that will get us back on the right track.

xoxo,

Robyn

Breakfast Sandwiches on Valentine’s Day & a Doctor Visit on a Snow Day

 

Happy Valentine’s Day, all.  Grant is always the hardest person to shop for, but the kid LOVES a good breakfast sandwich, so when I saw this gadget at Target, I knew it would make a great gift.  We all thoroughly enjoyed our egg, cheese and canadian bacon sandwiches this morning.  

Samantha drove up from school last night so she could go to her orthopedist appointment this morning.  I met her in Fredericksburg just in case the roads weren’t great getting home in all the snow.  As it turned out, the roads were totally fine.  The good news that came out of this morning’s appointment was that the doctor didn’t think that her condition would deteriorate any time soon.  The not-so-great news is there doesn’t seem to be anything right now that will make it any better.  The doctor we saw, who is an expert in his field, would not recommend hip replacement at this point.  While it may be in her future, she is not at the stage pain and movement wise that would make it necessary.  Sam is SO frustrated.  She is not bothered about the pain because she is used to it.  She IS bothered by her limited range of motion.  She feels that no one understands.  Truthfully, I don’t think any of us can fully understand what she deals with.  She is a tough kids and will get through this, but for today, she is really sad.  And I am going to let her be.  Eventually she will get the “this is not the end of the world” speech and the “we all have our challenges/it’s what you do with them” pep talk, but for today, she is allowed to be bummed out.  

We are enjoying another day off from school due to the 8 inches or so of snow that fell Wednesday night.  The dogs are napping.  Dave is napping.  Sam is napping.  Grant and Parker are playing a game, and I watched a full episode of iCarly without it occurring to me that I could change the channel.  We are looking forward to a quiet weekend with all five of us.  Dave has a big day on Monday with his first scan since he started the trial.  Very optimistic that we will hear good news.

xoxo,

Robyn

Dog Tired

It has been quiet around our house this week.  Dave came home from Hopkins on Monday, crawled into bed, and has emerged only occasionally to eat or watch a little TV.    To say he has been tired would be a huge understatement.  We had been warned that his red blood count was low this time around so fatigue would definitely be an issue.  Yesterday he decided that he needed to get out of the house and went to the Y to sit in the sauna for a little while.  I could tell that he was feeling a tiny bit better today when he  texted me to see where I was – he was awake long enough to realize that I had been out for a while.

Another side effect that has troubled him is nausea.  Sensitivity to smells is a sign of nausea and probably has been the bigger issue.  We have done very little cooking since he can’t tolerate the various aromas.  I have had to stretch my imagination to come up with meals.  Luckily Grammy and PopPop brought dinner over on Wednesday so I got a break!

The last issue that Dave has been dealing with is the one that has gotten him out of bed.  He continues to have significant pain in his right side.  It started after his Sirspheres treatment in August.  The interventional radiologist said it would eventually subside.  But this treatment seems to cause it to flare up.  Nothing notable has been seen on his scans.  The doctors are throwing narcotics at the problem.  While I have absolutely no problem with Dave taking what he needs to be comfortable, I think it is time to figure out the underlying cause.  He will have another scan on the 17th and if nothing shows up, I think it is time to look into another type of scan or test.

We will be spending this weekend enjoying the winter Olympics and relaxing.

xoxo,

Robyn

SMH

Dave’s schedule for today – 

7AM Labs

9AM Nurse visit

10AM Infusion

The schedule allows two hours between having blood drawn and the doctor/nurse visit so that by your appointment time all the information they need is at their fingertips.  Similarly time is allowed between labs and infusion so that the chemo drugs can be made.  This process is supposed to take 1 1/2 hours.  

We were up way before dawn’s early light in order to make the 7AM lab time.  After labs were drawn, we went to the little cafe to get coffee and something to eat.  Because the research nurse is ALWAYS behind schedule, Dave gave her a call to let her know where we were sitting and that his labs were done.  She called back and said she would be over right around 9.  At 9:30 she finally appeared to say that she was going to put her coat away and “get settled” and then she would be out to see us.  

At 10:15 or so, Dave ended up laying down on the bench and falling asleep while we waited.  He was exhausted from being up so early, not sleeping well last night and from the residual effects of last week’s treatment.  I drank my coffee and just kind of zoned out.  A loud voice brought me out of my stupor.  A woman’s voice was enthusiastically greeting someone.  She was telling the other person how beautiful she looked.  I didn’t think too much of it.  A few moments later, I happened to look up to see the young “beautiful” woman opening her wallet and handing money to her complimenter.  I still wasn’t thinking anything was amiss until the woman pocketed the money and told her she “appreciated her giving what she could.  God bless you.”  Panhandling in the lobby of the Kimmel Cancer Center.  The young woman looked a little stunned as she got on the elevator, and the other woman checked in at the outpatient center.  I am still questioning whether I saw what I think I saw.

As time continued to tick away, I sat and watched my husband sleep, I began to get annoyed.  Annoyance turned to frustration which eventually morphed into anger.  It was now almost 11AM.  How long does it take to hang up your coat?  The waiting room was at capacity.   Hopkins has been described as  “the ivory tower”, “the gold standard of medicine”, “cutting edge”.  How can such a prestigious institution accept ridiculously long wait times as common practice?  I had enough and went to the patient coordinator and told her I wanted the nurse paged because we had been waiting an hour and a half for her to hang up her coat and that our appointment was now two hours late.  Within minutes, Ellen was standing in front of us.  She sent us up to infusion and said she would consult with us there.  Part of me thinks that if i hadn’t spoken up, we would have been there for hours more.  After all, it has happened before.  

Once up in the infusion suite, things went very efficiently and smoothly.  Dave was taken back right away and hooked up to the IV.  Ellen eventually made her way up and shared Dave’s lab results.  (Much better numbers than this time Cycle 1.  The only exception being his red blood count which is at its lowest point to date.)  So all’s well that ends well.  I had calmed down by the time Ellen joined us, but I was very tempted to ask her “If Dave was your son/brother/father/spouse, would you think that the attention he got today was acceptable?”  I have a hard time believing that she could say yes.

xoxo,

Robyn

Laugh Lines?

Before the State of the Union, one of the local news programs showed a montage of photos illustrating how much Obama has aged during his presidency.  My reaction was “yep, that job would do it to you” and “he still looks good”.  It got me thinking about aging ,and I quietly congratulated myself for holding up reasonably well during the last few years.

Then yesterday I noticed this in the rearview mirror.

Are you seeing those cavernous crevices in my forehead?!  And around the eyes.  And….

Definitely caused by doing this.

I make this face when I am thinking hard or when I am confused or concerned about something.  In other words, I make this face A LOT.  Sam is coming off of a pretty rough string of stressful events.  A few of them I mentioned previously.  Her week was capped off when someone hit her parked car and then drove off.  Luckily some students witnessed the accident and called campus police who handled things beautifully – from guiding Sam through the accident report to locating the other car and its owner.  As Sam has been dealing with things, I have been doing my parenting from afar.  Making her laugh when she is feeling down.  Boosting her up when she is feeling stressed.  Giving her the tools she needs to deal with the insurance company and collision shop.  And being the person she gets frustrated with because the situation is so exasperating.  Wrinkle, wrinkle, wrinkle, crease, crease, crease.

Tomorrow Dave heads back up to Hopkins for his next infusion of Irinotecan.  He did really well this week overall with fatigue and some nausea being his biggest obstacles.  He was even able to go into work a few days and catch up a bit which I know he was very happy about.  If history repeats, the next two weeks are likely to be more challenging with lots of resting and staying home.

In the meantime, I am off to look for some sort of anti aging serum.  Or maybe a headband.  A tight one.

xoxo,

Robyn