The Cheese Stands Alone

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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

Dog Tired

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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

Bearing Witness

ImageDave typically does chemo on Wednesdays.  He spends most of his day in the infusion lab and then leaves with his pack which he wears for 48 hours.  When he gets home from the lab, he generally eats something and heads to bed.  Thursdays he sleeps in a bit and then heads off to work in the late morning or early afternoon.  At least this is what I assumed since I work on Thursdays and am not home.  This week, because of Thanksgiving, he had his infusion on Monday and gets disconnected today.  I don’t work on Tuesdays so I was home on his middle day.  He was down for the count.  He slept in, got up and ate something, read the paper and then went back to bed.  He slept the entire day.  When he did finally rally for a birthday dinner celebration with his family, he was still exhausted and feeling very ill.  I had no idea.  None.  Seeing his family did give him a burst of energy, and I think that for that few hours, he felt a little better.  When we got home, he went straight back to bed.  Yesterday was a very eye opening day.

xoxo

Robyn

Toxic

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On Friday, I went with my friend, May https://embracingtherollercoaster.wordpress.com/2012/09/30/cancer-for-dummies-3 to Village Green Apothecary http://www.myvillagegreen.com.  It is a shop in Bethesda that has lots and lots of vitamins, organic products and holistic remedies.  May is a wealth of knowledge herself, and she showed me the go-to guy in the shop to ask for help.  I picked up a sampling of things for Dave to try as well as a few things for the kids and me.  

I can’t help but think that it might be a good idea to try some natural products when dealing with side effects like fatigue, nausea, neuropathy, rashes etc.  Dave gets so many toxins pumped into his system every other week during chemo.  He takes 3-4 medicines daily for his diabetes.  Then he has 7-8 prescriptions to take before, during or after chemo to prevent or help with side effects.  And of course there are the recommended over the counter remedies.  Dave’s body is a toxic battleground.  I have no problem with the wisdom of modern medicine, but we are both open to other methods and schools of thought too.

xoxo

Robyn

 

A Never Ending Cycle

I know I have said it before but it bears repeating – side effects suck.   Today I touched base with two women who are currently undergoing chemo.  Both are suffering from the debilitating side effects.  I can’t even begin to imagine how tough it is.

Dave also had chemo this week.  Round #23.  He is exhausted and his stomach is in knots.   He has random bruises and rashes.   The most troubling side effect for him recently is “chemo brain”.  He is forgetting things.  Names of people.  Where he left something.  He misplaced his brand new jacket from LL Bean.   He bought it for himself recently, pleased with how perfectly it fit.  It’s not at home.  It’s not in his car or at work.  So, he probably left it in a restaurant or at a game.  He beat himself up over its loss.  And then in his distress he even turned on me.  His frustration with his memory issues was so great that in his irrational state he thought I might be hiding his things from him on purpose.  It is a vicious circle in which to live.  The chemo keeps the tumors under control.  The chemo causes barely bearable side effects.  Thank goodness for off weeks.

I think I have convinced him to take it easy this weekend.  That it is not a sign of weakness to lay low or veg out in front of the TV.  That being fatigued does not help with memory.  So, here’s to a weekend of hanging around the house, watching movies, playing games and napping.  (Fingers crossed.)

xoxo

Robyn

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