Two Pieces of Writing

This morning I read something that can really only be described as the most self-indulgent of tales.  Immediately after reading it, I regretted that I had.  The underlying tone seemed to be one of weariness with a tinge of self-pity in the guise of personal revelation.  I mean, really?  Who has time for that?  I think you take what life throws at you, and you barrel ahead.  I get that everyone needs to vent now and again.  I certainly do my fair share.  I just think some people forget to hit pause on the “woe is me” and need to remember their many many blessings.

On another note, my friend, Claudia, sent me a link to this article.  http://www.nytimes.com/2014/01/25/opinion/sunday/how-long-have-i-got-left.html?hp&rref=opinion&_r=2  This was definitely a worthwhile read.

xoxo,

Robyn

Stream of Consciousness

go to get a towel before shower

smattering of hand towels/washcloths available 

Grant.

ugh

probably has a giant stack of mildewing towels in his room

picking your battles

homework

parenting challenges

school

challenging students

This story.

Classes are usually held in the STEM Lab, but there are times during the year that I need to push into classrooms due to testing.  Last spring, I was in a fifth grade class teaching a lesson on flight.  I really enjoy working with this particular classroom teacher because I think she does an outstanding job.  Her teaching style seems effortless and yet she has the highest of expectations for behavior and achievement.

While I was working my way around the room helping small groups, one of the girls noticed that the side of my foot was bleeding a little bit.  Since I was wearing sandals, I had probably scraped it on something and didn’t notice.  One of the boys (I’ll call him A), who can be a bit of a handful, was struggling with frustration.  I thought I would give him a minute to escape the project to regroup a little so I asked him to get me a bandaid.  Without another thought, I returned to helping a student.  A minute later, I heard a loud, shrill “A! WHAT ARE YOU DOING?” coming from the classroom teacher.  I turned to see that A had donned a pair of rubber gloves and a paper mask and was victoriously holding a maxi pad high above his head.  I died.  It was one of the funniest things I have ever seen.  The girls were mortified.  The boys were equal parts amused/horrified/curious.  Now I know that laughter is probably not the appropriate teacher response in this kind of situation, but I had to admire the kid’s efforts with all the protective gear.  The classroom teacher and I made eye contact, and I grinned at her sheepishly.  “I feel like this is partly my fault.  I’m sorry.”  Having never taught upper elementary, I didn’t realize they even had those supplies in the classroom.  And I certainly never thought a bandaid mission would cause such a stir.  A is a sixth grader this year and I still have a soft spot for that kid.  Probably one of the funniest teaching moments I have ever had.  

xoxo,

Robyn

A Million Miles Away

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Well, maybe it is more like 164 miles, but sometimes it feels like much more.  I have already bragged shamelessly about how amazing my kids are.  I love being a mom.  We just had three snow days, and I enjoyed being at home with them.  I am always amazed by the negativity I read/hear coming from moms who are “stuck” at home with their kids. ** I’ve never felt stuck.  Just lucky.

The part of motherhood that I am still trying to figure out is how to parent from afar.  Sam and I have a very close relationship.  She is comfortable talking to me about all manner of things.  The challenge is when she is homesick or sad or struggling with a problem either academic or personal. I want to just jump in and help, but I know I can’t.  I believe failure is a valuable teacher.  I believe in letting kids sink or swim on their own.  So sometimes my responses are coddling.  Sometimes they are problem solving.  Sometimes they are of the tough love/ “you’re on your own kid” variety.  No matter what my outward response is, I do take her problems to heart and want to support her in the best way possible.

This has been a particularly tough week for her.  Someone she cares about deeply is dealing with issues that neither one of them are equipped to handle.  On top of that, she has also been dealing with what she thought was groin pain.  I told her she needed to make an appointment with an orthopedist near school.  We assumed the pain was probably muscular and would involve some sort of PT follow up.  The diagnosis that she left with today is that her femoral head is protruding into her hip socket.  This is causing her significant pain but could also lead to further injury, if left untreated.  He was of the opinion that she needs a hip replacement.  Yes.  You read that correctly.  A hip replacement.  At 18 years old.  So, of course, we are eager to get her up here for a second opinion.  She called her grandfather (a retired orthopedic surgeon) for advice on who she should go see and what he thought of the diagnosis.  She is anxious to find out exactly what is going on and what to expect treatment wise and is even willing to give up one of her fun college weekends to come home for an appointment.  This is when it is hard to be away.  She is stressed and anxious.  We have talked many many times today, and it usually regresses into jokes about her racing the other hip replacement patients in the hospital.  At least we still have our senses of humor!

So, although it is hard to be away right now, I am reminded how strong my oldest child is.  She is by no means happy about what is going on, but she is ready to take the bull by the horns and deal with whatever is coming her way.  And I will be right by her side cheering her on.

xoxo,

Robyn

PS The picture is of a pair of plimsolls.  And the song “A Million Miles Away” is by the Plimsouls.  Pretty clever, right?!

** I realized that this might sound as if I am judging anyone who has complained about being at home with their kids.  I am not.  I have not been in others’ shoes.  I am amazed by it because I haven’t really experienced it.  My kids are years apart in ages and for the most part always get along.  That is why I feel lucky.

Snow Day Update

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We had several inches of snow which means snow days, sledding, hot chocolate, baking cookies and watching lots of movies.  The kids and I have been in full relaxation mode.  Dave, on the other hand, has been trekking up to Baltimore.  When they did his blood work they determined that his counts were good enough to start round 2 of treatment.  They have not rebounded back to the “normal” range, but I guess the trial protocol has a lower margin of acceptable.  So, he is back to doing the five consecutive days of SGI injections followed by infusions of Irinotecan next Monday and the one following.  Dave is the first person on the trial not to be delayed by white blood counts.  He continues to be a super star.  They are lucky to have him.

I think we are kind of holding our breath until he has his next scan after this round of treatment – so sometime around mid-February.  In the meantime, we have a bit of positive news.  Dave’s CEA had been on an upward trend prior to starting the trial.  It went from 150 to 201 during a two week time period in December.  This week his CEA was 121.  The doctor told him that we may see it bounce around for a while, but I am taking this as a very positive sign that all he is doing is worth it.  His quality of life has definitely been compromised in the last month, so imagining those tumor cells being knocked out, makes it a little easier.  (Easier for me anyway.  He’s the one dealing with the side effects!)

It’s supposed to snow again tomorrow.  and Saturday.  and Monday.  We may never go back.  I’m okay with that.  I just downloaded a new book (This Is Where I Leave You by Jonathan Tropper).  And also we have cookies.

xoxo,

Robyn

Cutting Edge Medicine

Dave’s regular oncologist ordered a relatively new test for him.  Basically a biopsy sample is sent off to a company called Foundation One.  They look at the specimen for genomic alterations which may help identify therapies to which your cancer might respond.  Apparently the test is quite expensive and likely be declined by our insurance.  Dave’s oncologist assures us that this will not be an issue.  

Dave’s results came back –

6 genomic alterations

3 therapies associated with potential clinical benefits

8 clinical trials

The three therapies with potential benefits are not FDA approved for metastatic colon cancer but are approved for other tumor types.  There are 8 clinical trials available in phases 1 and 2 currently.  Only one of them is geographically close to us.  So, is this expensive test worth doing?  I think so.  Having options is a very good thing.  When we have talked to other about this test, the words “cutting edge medicine” inevitably come up.  While I appreciate being on the cutting edge, I just wish it was a little further along.

xoxo,

Robyn

Just Say No

While Dave was at Hopkins last Monday morning, he got an email from a lady with whom he works.  She knew of someone who had a three year old old english bulldog that he was looking to sell.

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Sam thought she was adorable and was already thinking of names.  My responses are the ones in blue…

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Dave asked if we could go and look at her over the weekend.  I said we could look but that I had many reservations (time, space, energy, money) about adding another dog to the family.  I also thought it would put additional stress on Cupcake, the senior citizen of the group.  I was very clear about it being highly unlikely that I would agree to get her.  I also went on to tell him that the only reason that I was even willing to look is because I didn’t want to say no to him because I understand how important is to have things to look forward to especially this week while he is housebound.

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So this morning we loaded Winston up into the car and headed off to meet Kahlua.  During the drive, I was thinking about the fact that I didn’t want to say no to Dave.  I was also thinking that the bulk of the responsibility of another dog would be on me if he has more weeks like this one.  Understandably he spent much of this week in bed sleeping.  I wondered if he was giving as much thought to how I felt as I was giving to his feelings.

As soon as we walked in the door I thought, “Oh no.  We are going to get this dog.”  She is very very cute.  The owner started to tell us a little bit about her.  Alarm bells and whistles were going off in my head – sensitive skin, special diet, cleaning between the wrinkles, rash under the tail, keep her in the crate while you are out, chews.  Dave didn’t seem to hear any of that as he was too busy bonding with her.  We walked Winston outside to have a family meeting.  I was still wrestling with saying no.  To my surprise, Grant was the one who dug in his heels.  He explained to Dave that we already have 2 tortoises, 3 leopard geckos, fish, a guinea pig and two dogs and that was enough.  He said he didn’t think that it was fair to Cupcake who is already stressed out by Winnie.  So in the end, Grant and I said no and Parker, of course, wanted to bring her home as did Dave.  We didn’t get her.

On the long, quiet drive home, I felt very very guilty.  I hate saying no.  I do it frequently but I always feel a little bad about it if the request is at all reasonable.  When we got home, Dave headed back to bed and I soaked one of the geckos who was having trouble shedding.  In the meantime, Winnie threw up all over the carpet.  This is when I discovered that we were out of carpet cleaner.  So off to the store I went.  On the way, I noticed that Dave’s car needed filling up so I took care of that.  I came home and scrubbed the carpet.  All the while Dave slept.

There is not an ounce of guilty feeling left in me.

xoxo.

Robyn

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