Biting. My. Tongue.

After Dave’s appointment on Monday, I was disheartened to say the least.  I felt that his doctor did him no favors and certainly wasn’t encouraging.  At the end of the visit, Dr. S gave me a hug and told me to “feel free to email or call anytime”.  At that moment, I couldn’t imagine why I would want to.  After all, he hadn’t heard me when I was sitting four feet away.  But I did email him.  I needed to let him know that he wasn’t seeing the whole picture with Dave.  My husband, a previously incredibly active and social guy has become a person who avoids most others, sleeps the day away, and spends his time ordering random crap from Amazon.  This is not cancer progression.  This is depression.  I haven’t heard back from him.  Go figure.

I made a deal with Dave after the appointment.   I felt that Dr. S had all but given him permission to throw in the towel.  Since I am not about to stand by and let that happen, I figured negotiating had to take place.  I realized that I am trying to rationalize with someone who really isn’t in the right frame of mind to be all that rational.  So, I told Dave that I would keep my mouth shut about work.  Not a word.  In exchange, he had to promise to try the increased dose of Zoloft and get counseling.  This has been SO hard and it has only been a couple of days.  Dave has not done much – went with me for a walk, hit the grocery store, took Parker to oboe lesson.  Honestly, it makes me want to cry.  If he slows down much more, I’ll have to scrape him out of the bed.  I am giving him time for the meds to kick in and hopefully for some counseling to take place.  I am hoping that in a better frame of mind, he will realize that it is boring lying around the house all day.  Samantha comes home from school at the end of the month.  I am hopeful that by then, even if it is just in an effort not to worry her, that he will get out of the house and do something meaningful.  The end of the month feels very far away.

I keep thinking about the last scan.  Yes, there was tumor growth.  But the tumors are still very very small.  Millimeters for the most part.  Now is not the time for anyone, especially his friggin doctor, to give up on him.  So, I am in a bit of a bipolar state – anger and sadness.  But as the good doctor suggested, when I think I might want to say something, I am going out with friends instead.  So, I had a coffee date yesterday, a 5 hour dinner date last night and plans for lunches on Saturday and Sunday.  Honestly, I am not sure how I will get through Friday without saying anything let alone a month.

xoxo,

Robyn

Tug of Work

Since Dave started the clinical trial in December, work has become an issue.  With the commute to Baltimore and feeling generally lousy, he missed quite a bit.  Luckily the two week winter break occurred so his absence was felt a little less.  Yes, there was tumor growth which ended the trial but prior to that was the Sirspheres treatment which radiated many of the previous tumors.  So, tumor wise, I don’t think we are much ahead of where we were, if at all.  That is not to discount the battle that Dave’s body has been through in the meantime.  I know he is tired.

We have come to a crossroads.  How is the rest of the school year going to look?  I am pushing Dave to set a reasonable schedule for himself (x days a week, x hours a day) and stick to it.  That way everyone knows when to expect him, decisions can be made, support can be given and he once again feels like an integral part of the team.  If you have a reason to climb out of bed in the morning, you will.

We met 5 couples at the Hopkins retreat over two years ago.  3 of the patients have since died.  We suspect the 4th one might have too since no one has heard from him and he wasn’t doing too well when we met him.  That leaves Dave and D.  D is the guy who has been living with stage IV colon cancer for over ten years.  He has been told on several occasions that “this is it”.  And he has proved them wrong every time.  D still works full time, referees baseball and basketball on the weekends and enjoys time with his family.  He has a supportive wife who kicks his butt when he thinks he might want to give up the fight.  I believe this is a combination that has led to his longevity.  Out of the 4 other people we met, 3 had stopped working entirely, 3 were clearly depressed and resigned to their fate, and 1 had a partner who was unable to support him because she was depressed.  I don’t ever want to think ” I wish I had said….” or “I wish I had done….”  The time to act is now.

I printed out a checklist from NIMH that I found in an article about depression and cancer.  Dave and I went over the list together and identified which might apply to him.  We are going to have an open and honest talk with his doctor at the next visit about this.  Usually Dave presents a very optimistic “everything is fine” face to the world.  I’ve asked him to let that guard down so we can do whatever we need to get him back on his feet.  It has been suggested to me by quite a few people that I contact his doctor myself and give him my perspective.  I completely understand this idea but find that I can’t do it.  To go behind Dave’s back just doesn’t feel right at this moment.  That’s not to say that I have totally ruled it out in the future though.

I have asked Dave how he would spend his time if he wasn’t at work.  How would be engage his mind?  What would he find value and purpose in doing?  I asked him if the tables were turned what advise would he give to me (or his sister or his brother).  I wish I could crawl inside his head for just a few minutes to figure out what all was going on in there.  It is a struggle to know how hard to push.  Am I being selfish?  Am I pushing him when he shouldn’t be pushed?

His response to missing work is generally, “I called work and everything is fine.”  I don’t know if this makes him feel like they don’t need him there or if he feels let off the hook as far as going.  I wish when he called/texted/emailed to say he might be in later that instead of saying “Don’t push yourself.  Everything is fine.”  That someone would say “Great.  See you at 10.”  or “Great.  There are some things that we need to talk to you about.”  Being valued and vital is important to all of us.  (I totally understand why people say what they do.  I would have done the exact same thing before now.)

I don’t know what is going to happen.  I know that it makes me anxious.  I can’t let my mind wander too far because the possibilities seem overwhelming.  I’ll let you know.

xoxo,

Robyn

(Except for the second to last one, Dave identified with everything else on this list to some degree or another.)

Signs and Symptoms of Depression

  • Ongoing sad, anxious, or empty feelings
  • Feeling hopeless
  • Feeling guilty, worthless, or helpless
  • Feeling irritable or restless
  • Loss of interest in activities or hobbies once enjoyable, including sex
  • Feeling tired all the time
  • Difficulty concentrating, remembering details, or making decisions
  • Difficulty falling asleep or staying asleep, a condition called insomnia, or sleeping all the time
  • Overeating or loss of appetite
  • Thoughts of death and suicide or suicide attempts
  • Ongoing aches and pains, headaches, cramps, or digestive problems that do not ease with treatment.

The Truth, the (Almost) Whole Truth, and Nothing but the Truth

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People often ask me how the kids are doing.  That answer is simple.  They are doing fine.  They all know varying degrees of Dave’s story.  It is not our intent to stress them out unduly nor is it our goal to hide things from them.  We find ourselves seeking the right balance of honesty and keeping them protected.  So two years, five months and eleven days in that looks something like this:

The Truth: Dave has stage IV metastatic colon cancer with mets in his liver and both lungs.

Parker’s Truth: Dad has cancer.

Grant’s Truth: Dad has cancer in his liver and his lungs.

Samantha’s Truth: Dad has stage IV metastatic cancer – this means that it has spread outside of the colon to his liver and lungs.

The Truth: The last treatment stopped working.  The choice was to go onto a third line standard chemotherapy or pursue a clinical trial.

Parker’s Truth: Dad is still being treated for his cancer.

Grant’s Truth: Dad’s last treatment stopped working.  He is participating in a clinical trial at Johns Hopkins.

Samantha’s Truth: Dad’s last treatment stopped working.  He is participating in a clinical trial at Johns Hopkins.

The Truth: It is likely that Dave will live with colon cancer for the rest of his life.

Parker’s Truth: Dad has to keep having treatment because the cancer is still there.

Grant’s Truth: Dad has to keep having treatment because the cancer is still there.

Samantha’s Truth: It is likely that Dad will live with colon cancer for the rest of his life.

We try to meet the kids where they are.  We let them know when treatment plans change.  We DO NOT inform them of every new growth or development that occurs.  Most of all, we give them opportunities to talk to us and ask questions.  It usually happens in an organic way.  While talking to the kids about the importance of washing their hands as soon as they get home since Dave is susceptible to germs right now, allows conversations to occur about the current situation.  Sometimes they have questions, sometimes the questions pop up much later after they have a chance to mull things over.  I believe that the kids are fine because they feel loved and protected and they trust that we are not hiding anything from them.

Here’s where we were on this topic 18 months ago… https://embracingtherollercoaster.wordpress.com/2012/07/24/the-kids-are-all-right

xoxo,

Robyn

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

Bouncing Back

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Today I ended up in two random discussions about cancer.  In the first one a parent from Parker’s class shared about a cousin who has colon cancer.  He was given mere months to live well over a year ago.  I love hearing about people blowing those predictions out of the water.  The second talk was with someone I barely know.  His wife was diagnosed with cancer a few months ago, and they are treating it aggressively.  Her chemo treatments are just starting so he is looking for any and all advice as to how to best support her.  We shared information, and I said something about Dave’s side effects being cumulative over time.  He said he hadn’t really considered that.

Later I was thinking that the effect of chemo is kind of like throwing a tennis ball against a wall.  In the beginning you have all the energy of your (formerly perfectly healthy now you have cancer) self.  So you throw that ball with all your might and eventually it bounces back to you – and YOU bounce back almost as good as before.  As time and treatment go on though you have less energy to throw that ball and find that when that ball bounces back, it falls shorter and shorter of its goal.  Sometimes you need help even picking up the darn ball and flinging it towards the wall.  Sometimes you want to skip the ball and just beat your head against the wall.  I feel like Dave has been at this point recently.  So he is visiting his parents for a long weekend – golfing, getting some rest, and eating yummy food.  He is also giving some thought to altering his work schedule to work with his current energy level and take some pressure off of himself.  On Wednesday, we went to the Life with Cancer Center (http://lifewithcancer.org/index.php) and discovered the many many options they offer.  Dave needs to take some time to reenergize so that he can continue this tedious arduous exercise.

xoxo

Robyn

Pushing Back

ImageI’ve had a lot of time on my hands lately.  Dave is in Chicago with the Tremaine men, Samantha is at Beach Week, and Parker is at Grandma’s.  That leaves me and Grant.  Or to be more exact me, Grant and Grant’s friend, Sean (https://embracingtherollercoaster.wordpress.com/2013/01/26/grant-part-2).  The boys have pretty much been doing their own thing with the exception of seeing a movie with me and eating a few meals together.  That has left me with time to read and time to think.

When I started this blog, my main purpose was to have a place to share information about our cancer journey with friends and family.  It was becoming too hard to send updates or make phone calls in a timely manner.  Over the last year, the blog has also become a place for me to reflect on the good, the bad and the funny in our lives.  I have gone back and reread some of my previous posts and realized that some of the tones were not exactly what I had intended and some of the messages were not what I had originally set out to convey.  They are snapshots of what we were experiencing during those times.  From the world map that shows up on my home page, it looks like I’ve picked up some folks along the way that extends beyond our family and friends.  My hope is that something that I have written will be helpful in some way.

It is with that purpose, that I share a phenomenon that may or may not be unique to us.  From the day of diagnosis, whenever we have gotten bad news, Dave has tried to push me away.  He didn’t want me to go with him to his initial appointments.  I am stubborn though and went anyway.  He needed me to and ultimately was glad that I did.  When he had his first surgery, he kept trying to kick me out of his hospital room.  I came back anyway.  I think this happens for several reasons.  I think he is trying to protect me.  I think he is trying to protect himself (dealing with others emotions as well as your own is hard).  I think he thinks he can handle it all on his own and spare everyone else, but no one can.  In February, Dave’s CEA number was 8.  Since that time, it has slowly been creeping up.  So, it took me a while to recognize the pushing away phenomenon this time.  But I did.  And now we march forward.

xoxo

Robyn

Conflicting Information

We met with an interventional radiologist who is affiliated with Fairfax Hospital.  He works with a radiation oncologist and can perform the Y90 or Sirispheres procedure.  As thorough as we thought the doctor from Reston was, we learned even more information yesterday.  Some of it was contrary to what we had been told on Monday.  This doctor says that chemoembolization is not an appropriate treatment option as its success has been in primary liver cancers not metastatic colon cancer.  He also says that Dave cannot be on Vectibix concurrent with the radiation treatment.  In addition, the “keeping your distance” after treatment is unnecessary.  One of the bigger pieces of information we gained was that both sides of Dave’s liver would have to be treated.  The Reston doctor said that Dave’s lesions were contained to the bigger right side.  Yesterday we learned that there a tumor on the left side which is very close but much deeper to the site where the resection surgery was done.  So, Dave will meet with the radiation oncologist Monday morning, and we will start scheduling the procedures from there.  Once again, when we think there might be a decision to be made, there really is only one path and we know we should be taking it.

I just dropped Dave off at the airport.  He is flying to Chicago to meet up with his dad, uncle and brother for a Tremaine men’s weekend.  They will be cheering on the Blackhawks at game 5 Saturday night.  Very thankful that Dave has this opportunity and that the men in his family have made this weekend happen for him.

xoxo

Robyn