A Knock at the Door

Dave’s car is having some issues with the A/C so his auto tech teacher offered to take a look at it.  We met at John’s house before going out to dinner tonight, parked it, and left the keys under the mat.

Fast forward 5-6 hours.  There is a knock at the door.  It is after 10PM so I look out the window to see who is there.  I was shocked to see a Fairfax County police officer standing on my front step.  With a very stern face he asked if there was a Dave Tremaine home.  I informed him that Dave was asleep.  I wondered what on earth he could want with Dave.  He asked if Dave left a car at a house on Magna Carta Drive.  My mind instantly thought that the car had been hit or broken into.  But no.  The officer said that the owner of the house was freaked because a strange car had been in her driveway all evening.  Those cul de sacs all look so similar….

xoxo

Robyn

 

This Could Be Interesting

Remember when I read this book?  https://embracingtherollercoaster.wordpress.com/2012/08/26/the-fault-in-our-stars

At the time I was trying to decide if it would be appropriate for Samantha to read.  Guess what Grant’s required summer reading is this year?

xoxo

Robyn

snapshots from the weekend

A good time was had by all.  Sammi and I are off to CNU.  Dave is off to a retreat in Annapolis. and Parker is still at Grandma’s.  Grant is on his own for a couple of days. Looking forward to some family time at the end of the week!

xoxo

Robyn

Pushing Back

I’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

The Cancer Card

There are a couple of topics that I have have been mulling over lately.  They are both difficult to write about because they are also both challenges with which to live.  I thought I would attempt to write about one and save the other for another day.  My disclaimer is that I don’t mean to sound either unsympathetic or unappreciative.  

Since Dave was diagnosed in August 2011, I don’t think there has been a single thing that he has wanted to do that I haven’t agreed to.  We bought a puppy; we went to Disney World; he’s taken numerous trips to see friends.  ALL of this has been great.  However, there have been a couple of times that what Dave was requesting seemed unreasonable to me.  This is where the challenge lies for the spouse.  I don’t want to say no.  I don’t want to deny Dave anything because quite frankly we don’t know how much time he may have on this earth.  

Lately I have been thinking about this concept A LOT.  The reality is that none of us knows how long we are going to live.  Is it realistic to “live like you are dying”?   It is not an easy question to answer.  In fact, it seems impossible at times.  The reality is that we still have three children.  We have jobs and responsibilities.  And sometimes, the request doesn’t feel fair or sensible.  The first time we encountered this obstacle I reached out to some of the people involved and didn’t really get much in the way of support.  I suppose that is because they were also struggling with interfering with something Dave really wanted to do.  The most recent time, I again had someone say to me “I don’t want to get involved.”  What I have realized is that it is going to be up to me to draw the line in the sand.  It is a responsibility I have as a wife and as a partner of someone with cancer.  I feel both guilty and justified.  

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

Hugs

When we were in our late teens or early twenties, my friend, Alex, commented that people feel a need to hug me.  Maybe it was after I told her about a professor who randomly gave me a hug, or it could have been when we were new teachers and people would great me with a hug and her with a warm smile and a handshake.  We decided that I gave off some sort of “hug me” vibe and she did not.  It is something that I have been aware of since then.

Today we met with a radiologist to discuss options for treating Dave’s liver lesions.  We have two options.  Y90 or chemoembolization.  The doctor was very thorough with his descriptions of both and even drew us pictures so that we could better understand.  The procedures are similar in many ways but the major difference is what the microspheres are carrying.  In Y90, they are carrying radiation which zaps the tumors.  Whereas with chemoembolization, the spheres carry chemotherapy drugs (in this case Irinotecan) directly to the tumors.  There are different schools of thought on which method is more effective.  We are waiting to hear back from Dave’s oncologist, but we are definitely leaning towards Y90.  It involves two procedures.  The first day, the radiologist goes in and maps the path to the tumors blocking off any arteries where the radioactive spheres shouldn’t go.  Afterwards, they inject a fluid which will travel along the desired path to make sure that no more than 20% of the radioactive spheres could make their way to Dave’s lungs. Apparently Dave’s liver is ideal for this kind of procedure even though he had the resection surgery previously.   The second time Dave goes in, they would inject the microspheres.  For a week afterwards, they recommend that he stay 3-6 feet away from people as a precaution. Follow up scans would be done to see how the tumors are responding.  Unfortunately the hospital closest to us is still going through the process of being licensed to perform Y90.  The doctor we met with has years of experience at another hospital but Reston Hospital won’t have it until August or September.  We would like to start sooner than later, and it can be done at Fairfax, Georgetown, George Washington Hospital, Hopkins, U of Md. and likely others.  We are so fortunate to live in an area with so many excellent health care options.  

We thanked the doctor, shook hands, and headed out the door.  He walked us down the hall a bit and shook hands with Dave again.  Then he put his arm around my shoulders and gave me a side hug and wished me well.  As I walked away I couldn’t help but wonder what vibe I had given off that made the doctor, who we just met, give me a little hug.  Did I seem like I needed reassurance or sympathy?  I really hope not.

xoxo

Robyn

“Relax.”

Perhaps the most annoying two syllables in the english language?  You are telling me to relax?  Do you know what is going on in my life right now?  No?  Okay, then hush.

After Dave’s appointment this morning, I attempted to drop off Sammi’s MRI CD at the orthopedist’s office.  They wouldn’t take it.  They wouldn’t talk to me because now Sammi is 18.  Frustrating but I tried to be understanding.  I asked if I could just leave it and perhaps the doctor could take a look and let us know if there was anything we needed to do before my child heads off for three weeks.  Nope.  Eventually after some sighs of annoyance and a few glares, the receptionist went back asked the doctor if there was anything they could do.  Because they “know me”, they gave me a wink and a nod and said “we saw something on the scan but Samantha should be fine to head off on vacation as long as she wears the splint.”  As I was leaving, the receptionist told me to “relax”.  I kept walking.  Had I turned around, I might have thrown something at her.

Dave’s appointment went fine.  We now have a new plan of action.  I feel like it is aggressive which I like.  He is going to start on a third line treatment called Vectibix.  It is infused for an hour every other week.  Many of the side effects should be more manageable than those he is currently experiencing.  There is a dreaded side effect that involves a skin rash, but I am hopeful this will be minimal.  In addition to the Vectibix, Dave will also go in on Monday to meet with a radiation oncologist to discuss Y90.  Y90 is a procedure in which they inject microspheres that find their way to the liver to radiate the tumors.  (Okay, obviously I didn’t go to medical school but this is my basic understanding of the procedure!)  For me, it is a relief that we have two ways to attack the cancer right now.

Tomorrow is graduation.  And then All Night Grad Party.  I will be there from midnight to 5AM, if you are looking for me.

xoxo

Robyn

I Don’t Know Much….

I tend to think of songs that relate to events or words.  Today we got an email from Dave’s doctor that told us a little, but overall I felt like we didn’t know very much.  So naturally this is the first thing that popped into my head…

http://www.youtube.com/watch?v=i43fSjbEmA8

Anyway, on to the real news.  The brief email Dave got said that his lung tumors were stable (good news) but that the liver tumors had shown growth (not such good news).  In the whole scheme of things, I think we are feeling relieved.  I was happy to hear that there were no tumors in any new locations.  It will be helpful to read the actual scan report and see all the details.  We will go in on Thursday to discuss treatment options.  Dave is dreading some of the available chemo drugs and their side effects, but he is also in the slim margin of people who don’t lose their hair on his current regimen.  So, hopefully he will again be able to defy the odds and escape some of the ickier side effects of any future drugs.

On a different medical note, Sammi’s wrist is still given her trouble so she goes in for an MRI tomorrow.  The scheduler at the radiology place was an angel.  The only available appointment was Friday a few hours before graduation but I took it because I didn’t really have a choice.  She called me back later and had saved me a better appointment time for tomorrow at a different location.  She could have hung up and not given us another thought but she didn’t.  Small kindnesses.

xoxo

Robyn

“I read your last post, but what does it mean?”

Dave has blood work done the day before he is due to go in for chemo.  This allows the doctor to check his blood counts to make sure that his body is ready to handle the next round.  In addition to the standard blood tests, they will check his CEA level periodically.  Your CEA level can rise if there is tumor growth or metastasis.  It can also rise if you have an infection.  As tumors die, they can cause the CEA level to rise.  So, is a rising CEA level something to worry about?  We don’t really know.  The last time Dave’s started to “trend upward” was after he had his colon and liver surgeries and had completed his 12 rounds of Folfox.  At that point, as far as we knew, Dave was tumor free.  But when his blood work came back showing his CEA level had risen, he went in for a scan and we found out that he had multiple new tumors and some of them were in his lungs which was a new location.  The slow rise in his CEA over the last few months from 8 to 12 to 22 to 39 may be an indicator that his current chemo regimen is not as effective as we need it to be.  So, the best we can do is see what the scan results show on Tuesday.  It might be time to explore different chemo options.  In the meantime, I am going to think optimistically and keep Dave doing the same.  All prayers, good vibes and positive thoughts appreciated.

xoxo

Robyn