Am I Talking to Myself?

ImageI am not sure there has been a time when I have felt less understood. Today as I sat at Dave’s appointment and heard myself speak and then listened to the responses, I felt as if I were in some parallel universe. I wondered to myself if I hadn’t spoken out loud. Dr. S asked how Dave was doing and my response was “not as well as he would have you believe.” I explained that I had taken a five day trip to Florida and returned to a very changed Dave. I expressed my concerns at his plans to “back away from work” and that he seemed to be putting his life on hold until the next scan results in six weeks. I mentioned that Dave was spending the majority of his time in bed or sitting around the house which was just not Dave. Here are some of the comments that these thoughts elicited –

“You feel like you are waiting for Dave to die.”

WHAT? No, I feel like Dave is waiting to die, and I am trying to get him to engage in life and live.

“My advice to you is to bite your tongue when he doesn’t want to do something. You will only end up frustrated. Instead go out with a friend.”

I can’t sit around and let him check out of life. And I wouldn’t call it frustration, I would call it fear.

At one point, Dave managed to divert the conversation to Jeff and his movies. I sat and watched the conversation and thought “who the f**** cares about Jackass right now?” Needless to say, I am a little frustrated with the mental health care aspect of Dave’s treatment. The reality is that he is not as engaged with his friends, work and life. And while I will not knowingly create more stress in his life, I will not just sit by and watch either. And I call on you his friends, colleagues and family to do your part too. Let’s all keep him engaged and involved in life. I believe strongly that attitude plays a big part in survival. Thank you for including him in events, asking his advice, and inviting him to do things. He will probably say no. A lot. But he might say yes sometimes too.



A Reluctant Spokesperson



I knew that I had to accompany Dave to his appointment yesterday.  I felt that he needed me to share my perspective as sometimes he downplays what is really going on.  Before we went, I made a brief list of what needed to be discussed.

* Depression – signs I am noticing, how to treat, things to watch out for

* Chronic side pain/ unresolved stomach issues – reluctance to use pain meds, dietary changes, other solutions?

Usually when we go to appointments, I sit and listen only asking an occasional question.  I had to gear myself up to take the lead and contradict Dave if necessary – not my favorite role but it had to be done.  Dave’s appointment was with a research nurse.  While we were waiting for his labs to be drawn, she started asking him how he was feeling.  My ears perked up when she said “Any issues with depression?”  Dave said only a little mostly caused by fatigue.  I jumped out of my chair so I could get closer to the conversation.  I explained to her that I had gone away for five days and when I returned I noticed such a dramatic shift in Dave’s mood that I asked him if depression could be a side effect of the trial medication.  Turns out it is.  I explained about the list I had printed out from the NIMH website and how Dave related to almost all of the signs and symptoms.  She asked Dave if he thought he needed anything to help with it.  He said no.  At about that point, Dave was called back to do blood work so she said she would talk to us afterwards.  

We met up again a little while later.  She went through the standard checklist reviewing medications and side effects.  When she asked about pain I prodded Dave to talk about his side pain and brought up his reluctance to use the prescribed pain meds.  She encouraged him to take something when needed to stay ahead of the pain and reassured him that they are more than okay to use.  We discussed his ongoing stomach issues.  She wrapped up by saying that after consulting with Dr. S she had called in a prescription for Dave at our pharmacy for an increased dosage of Zoloft.  She also told us she had made an appointment with Dr. S for Monday afternoon so we could talk about the chronic pain and the depression with him.  I was relieved to hear that they were taking the depression seriously and I felt that she was very much listening to what I was saying.  When you are sitting there it is so easy to start doubting yourself.  Am I making this a bigger deal than it is?  Is he depressed or is he really just tired like he is saying? 

We grabbed a quick bite to eat and then headed home.  At that point Dave was miserable.  You see he had been in pain Wednesday night.  So much discomfort that he wasn’t able to sleep.  But he didn’t take anything for it.  So by the time he took something with his food, it was really severe.  He ended up throwing up breakfast, the pain pills and whatever else he had recently ingested.  I headed into work once I could see that he was resting comfortably.  Last night we talked about the appointment and I reiterated the point made about taking the pain meds when needed.  He agreed with me and knew that the vomiting was directly related to the pain.  Lesson learned.

I am glad that I went with him.  I am glad that I voiced my concerns.  And I will definitely be going with him on Monday.



Not Ready

For the second year in a row my parents said to me, “You need a break.  Where would you like to go?”  And for the second year in a row I said “Somewhere with sun and water.”  So Mom and I headed to sunny glorious Florida for five days.  There was a lot of this –


Some of this –

ImageFresh shrimp tacos –


And this dive that satisfied Mom’s craving for peel and eat shrimp (Looks can be deceiving.  The food here was great!) –


We spent our time walking and talking and letting the sun settle over us.  Well fed and well rested, I thought I would be ready to tackle whatever might be waiting for me at home.  But I was wrong.  I came home to a lost retainer situation, work, and stress coming from Dave.  So that first night, not ready to deal with any of it, I went to bed.  Over the next few days as I was catching up, I spent time with my eyes closed trying to recapture that serene feeling that I found at the beach.  I am so grateful for my parents who plucked me out of the snow and stress and gave me time to regroup and relax.

I have mentioned that Dave has been inconsistent about work.  That has been a big stressor between us lately.  I have been trying to dig beneath the surface to figure out the underlying cause.  Yesterday before I left for work, I sent him this email hoping that it would remind him of what he loves about his job.  (Minnie Vinnie is the bearded dragon he keeps in his office.)

“so i was thinking. i know you usually go to school in the afternoon. i think it would be really amazing if you could go, grab mini vinnie and hit the hallways. i’m sure the students would be thrilled to see you but more importantly is the impactful and vital lesson that you would be imparting that no matter what life throws at you, you keep persevering. that is something i try to teach my students every day. you are a living example and what you would teach them by merely being in the hallway to greet them is more important than anything they will get in any classroom. at the end of the day, you are an educator with an inspirational, valuable lesson to impart.”

I don’t know if my words had much impact on Dave but writing them down did remind me once again of how strong and amazing Dave is.



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.



(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.

Quick Update

Just a quick update on where things are in the Tremaine house.  Dave is set to start the new clinical trial tomorrow (fingers crossed).  There was a slight delay last week because he had to have a fasting blood sugar under 170.  Although he went into the lab several mornings, his numbers were too high.  Usually Dave has very good control over his diabetes but chemo messes with that greatly.  Or it could have been the pancakes or the ice cream sundaes.  (Why is it human nature to not really want something until someone tells you you can’t have it?!)

So, he was finally able to get a good blood sugar reading on Friday.  Tomorrow he goes in to finish up paperwork, labs, and then his first treatment which is a pill this time around.  After tomorrow things should be relatively simple.  A pill a day at home and going in every couple of weeks for labs.  Then in about two months a scan to see what is going on.  Hopefully this targeted therapy will get in there and kick some cancer butt.

Work for Dave seems to be hit or miss.  This week it has pretty much been a miss.  Hopefully the side effects from this new treatment will be manageable so he can get into a more consistent routine.  

As for me, I am off to Florida with my mom tomorrow.  It is supposed to be warm and maybe a little rainy at times too.  I’ll take it though.  In Reston tomorrow it is going to be a high of 29 degrees with chances of snow Sunday into Monday.  I am so looking forward to some sun (hopefully), some rest (definitely), and time with Mom.  I won’t have to be stressing about whether Dave is going into work (he will or he won’t), whether Grant’s IBMYP project gets done (it will!) or hopefully anything else.  I have stocked the fridge and the pantry and have left a very detailed itinerary of who needs to be where when and what they need with them.  Pop Pop will be helping out too.  It does take a village.





This was my view last year from my lounge chair.  Let’s hope for more of the same!!


Sometimes Love is a Mason Jar



Growing up we drank our sun tea out of mason jars.  I am not sure where this originated, but Mom had (and still has) them available for the beverage of your choice.  Dave and I continued this practice at our house.  Our kids’ friends think it is hilarious.  “I’d like a jar of water, please.”

For whatever reason my favorite one is a quart sized wide mouth jar.  It is the only one of its kind at our house.  We have pint sized and quart sized but only one of the wide mouthed variety.  Everyone knows to look for “widey” if they are getting me a drink.  Unfortunately widey isn’t always clean and available for use.  

Today I came home to this – 



If that’s not love, I don’t know what is.



Back in Charm City – Part 2

So – this exists.  How I wish I had known about this place sooner.

4th floor – Orthopaedics/Osteogenesis Imperfecta


He had us at the first swipe of his fountain pen.  Moments earlier we heard him across the hall on the phone.  It was a rather terse conversation in which someone was getting a deserved dressing down for not following his orders.  Literally a case of life or death.  When he entered the room he was a little bit (okay quite a lot) older than we anticipated.  He sat down at a small desk and patted his pockets in search of something.  Samantha and I exchanged uneasy glances.

Once he located his fountain pen, unscrewed the cap, and began to speak, we were certain that we were exactly where we needed to be.  Dr. Shapiro exudes expertise.  He talked to us about Samantha’s bone density scan explaining that overall it was lower than normal but not quite to the alarming level yet.  Questions were asked about previous fractures, genetic testing, family history and overall health.  When he asked Samantha about her surgeries, she explained that she had her right radial head removed several summers ago.  His response, “I don’t need to hear any more.”  Yet, he continued to ask many, many questions.  I felt like I was back in school trying to come up with the right answers.  We discussed hearing loss, dental issues, and scoliosis.  He gave Sam an exam to ascertain her overall mobility.  Then he sat down at the computer and with a few clicks pulled up an article he wrote that he wanted us to read.  It was an article about OI Type V – common presentations include radial head dislocation, long bone bowing, calcification of interosseous membrane, and hyperplastic callus formation.  Samantha has 3 out of 4.  (She has the calcification between her ulna and radius and always wondered what it was on the X-rays.  She does not have hyperplastic calluses as far as we know.)

Dr. Shapiro ordered blood work to determine calcium and vitamin D levels.  He also suggested DNA testing.  In OI Types I-IV there is a collagen production issue.  In Type V, there is a gene mutation.  He suggested that I call our insurance company to determine coverage.  While I was on the phone with Aetna, he stood there answering questions for me and eventually just took my cell phone and handled the call himself.  I had mentioned that in eye exams Sam’s eye pressure tended to be a little on the high side.  He said there are institutions like Duke and University of Illinois that are looking at correlations between OI and glaucoma.  While Sam was off getting blood drawn, he called the ophthalmologist and explained to her what kind of testing Samantha needed the next time we came in.  He also put in calls to the orthopedist we had seen the day before and Baylor School of Medicine who would be processing the DNA genetic testing.  He stepped out for a minute explaining that he needed to “go upstairs” and that he would return shortly.  Less than ten minutes later he was back with a copy of the article he had shared for us to take home.

We have another appointment scheduled in early May.  Sam is going to have a infusion of Reclast, an osteoporosis drug.  This drug has proven beneficial in children in improving bone density.  At Sam’s ripe old age of 18, the efficacy starts to go down but with no real risk, it is worth trying.  Unfortunately we weren’t offered this choice when she was younger.

All in all, I think that Dr. Shapiro spent about two hours with us.  I have never felt such collaboration between doctor, nurse, patient and parent.  One of his final comments was how important and helpful it will be for Sam to know exactly what type of OI she is dealing with as she gets older.  We thanked him profusely as our heads were swimming in information.  I am sure there are details that I am leaving out because there was so so much said throughout the morning.  Sam’s spirit literally lifted as we left that office.  I think a lot of her stress has been replaced with information and doubt replaced with hope.  What a tremendous opportunity.

Dr. Shapiro is what Sam deems a “real man of science”.  We left him with something which I am sure he will puzzle over before we see him again.  Sam’s OI is considered relatively mild (even with 20+ fractures in her past).  Her hip protrusia doesn’t really fit the profile.  I have no doubt that he will be looking for more answers and causes in the days and months to come.



Back in Charm City – Part 1

“We can think about surgery when you can no longer walk.”

“Keep taking Naprosyn but remember to see your primary physician every few months as it can cause liver damage, stomach bleeding, and high blood pressure.”

Since neither of these solutions was palatable, Samantha and I decided to take to the road after discovering the Kennedy Krieger Institute ( through the OI foundation website (  Wednesday morning, after dropping Parker off at school, we stopped to grab a cup of coffee for the road.  Traffic was surprisingly light on the toll road as we sipped our coffee and chatted in anticipation of the day.  The trip was uneventful until we were almost at the Maryland line where we were greeted with a wall of traffic.  All lanes.  Completely stopped.

After sitting in the traffic for about 45 minutes, I got this message –


Apparently an accident involving an SUV and a jackknifed tractor trailer shut down the beltway northbound.  Medevac needed to land.  Sam and I talked about whether it was lucky or unlucky that we stopped for coffee.  Many back roads, phone calls to Kennedy Krieger, and one grouchy receptionist later, we arrived an hour and a half late.  We had been rather condescendingly told that they would still honor our appointments but we would be put at the bottom of the list after “the patients who managed to arrive on time”.  I just kept repeating “kill them with kindness” in my head so the less kind words wouldn’t come out.

At the end of the day, we left hopeful.  The orthopedic team we met with at KKI offered a potentially beneficial, less invasive than hip replacement option.  If the physiology is right, a surgeon can go into Sam’s hip arthroscopically and shave down the hip socket giving the femur ball space to rotate alleviating pain and restoring some range of motion.  We have been referred to a surgeon at Johns Hopkins who successfully does this procedure.

Little did we know that this was the tip of the iceberg as far as what we would learn during our time in Baltimore.



I wrote about Sam’s hip protrusion here and here