Caregiver Thoughts - The First Round

[This post is written by my husband and caregiver. He will contribute occasionally.]

Perspective from a Caregiver

When the news first hits, there are so many thoughts and Thoughts and WTF??

• Whew, it's not me!
• It should be me! No! Maybe? Yes, me!
• Dodged a bullet
• But why?
• No-no-no-no, not my wife/husband/partner/best friend!
• What if I get sick or killed too?
• Who's picking up the kids today?!
• What does this mean?  And what should I make for Dinner?
• I can't deal with this?  Should I deal with this?
• Is this Real?

Scared, panic, worry, the mundane. When first hit whacked broadsided slapped given this news my reactions were all over the place. Learned from others in a support group that I'm definitely not alone in reacting like this. 

The Commitment

I guess one of the first things that blew by me at the diagnosis was that I had mentally made The Commitment to stay with my gal. It did not even cross my mind till later, when I had to reassure her that I was not going anywhere.  And I have both had to and felt my own need to reassure her since, in many ways.

From others, we've heard many different stories: from my sort of response, to others bailing out before the diagnosis had even left the doctor's lips.  Certainly those who had relationship problems before, this is one of those life-altering events that can rip people apart or bring closer together.

I want to judge those who can't commit, because emotionally we can't help but be judgmental.  But I also can't really judge anyone because I really don't know their stories.  Even when I do know a bit, it's still less my place to adjudicate.  It's hard not to, especially with some of the awful behavior people do.  And it is just so frustrating to hear about the breakups and divorce in the midst of dealing with such an illness, especially when kids are involved.

Surprisingly, some of the bad behavior comes from the sick person themselves.  In one case we heard of, brain mets changed a person's thought processes quite a bit. Still able to function quite well, but this person pushed all away but an older child.  That's scary, especially for the former partner.  Will that happen to us?  We worry about that occasionally.

So, I've made my Commitment both a long time ago and recently with the illness.

Telling Family and Friends and Co-workers

This was relatively easy for me to start to do, but I had to stop myself and wait for my wife to figure it out who to tell, and how and when.  It was important to her, that control of the messaging.

Especially as a Teacher, she needed to come up with way to tell her school and students.  Leave it to her teaching instincts to find a way to use this to teach her students something too!  I love her for that.

Telling my co-workers and business partners was my task, and that went straightforward for me.  Reactions were mixed, but mainly supportive.  Generally grateful, although hearing and saying the same things many times does get old.  But it was new to those who had not heard, so I worked through the repeats.  Learned and heard many cliches!

Personal Care

Feels guilty and shameful to talk about, doesn't it?

I'm the lucky one, not ill.  Hopefully not going to die before my time!

But I need to be there healthy and able to help her, and our kids and the rest of our family.  So, personal care is as important as any medical care.  It took me a while to get that sorted out mentally.

Medical Self-Care

First and foremost, even in the midst of some of our busiest times in the hospital and rehab, I still had my own doctor and dentist and other appointments to take care of. Sometimes they got pushed out maybe a little too far, and then I had to catch up on a treatment so I would not get sick.  Running out of a prescription once, I found I really did need that drug, darn it!

Moral of the Story:  Don't let something like a bad tooth bring you down.  For want of a nail...a war was lost.

Just Self-Care

Most of my self-care is actually very small and very personal.

I often go to lunch on my own.  I carve out time on the calendars for stuff for me.  Even going grocery or other shopping on my own becomes in some ways my time.

And I continue my Volunteer works, although vastly scaled back in some cases.  But Red Cross blood donations I have continued to this day, after gallons donated.   Simple, and important to me.

BTW, I'm an INTJ/INTP if you know what that means. Basically Introverted, so I will internalize a lot.  Which is why eating alone is nice, since I don't have to rev up the energy to make conversation.  I like to be alone for long periods, and it helps me recharge and rejuvenate.

Other physical things I like to do are just simple walks, taking the dog around.  Been years, but when I can get to do them Dry Saunas are always great for my sinuses and ears.  And deep-tissue massage once or twice a month I've tried to keep doing, as I really notice when I don't get it.

For me it does not have to be a big deal or even cost any money.  And money has been very tight for us the last few years.  But a little special thing just for me sometimes is worthwhile. Such as I'll buy a special brand of pickles I like, and not share it with the rest of the family!  Yum.

Laughing at the situation

We use a lot of Gallows Humor.

For example, my wife says she'll haunt me from her urn when I try and bring a future date home.  I tell her that urn would get stuck out in the shed for the date, and please-please no haunting after midnight!

I've always loved that about my wife  Her wit and humor has meshed well with mine (mostly).  And we have been able to joke about things from time to time, such as the urn jokes and other silly things.

Sometimes that is the only response I find I can have.  The absurdity of the situations, the unfairness. Our humor has helped us.

https://XKCD.com often has helped me!

Letting It Go

When my wife had to go to a Rehab Facility was probably one of the hardest times of my life, outside of the ER visit that preceded it and the time she spent recovering in the ICU.  Rehab went on for weeks where I would spend the afternoon and evening and sleep at the Rehab with her.  Get up early in the morning, run home and take some kids to school, shower, check on the place, get mail, run errands and then scoot back to be with her.  After a week we fell into a rhythm, and I got a usable chair to finally sleep in.  But during that Rehab time, I neglected a lot of other things and people.

I bought the kids the big box of Ramen from Costco, as they were old enough to feed and mostly take care of themselves.  I didn't buy the good Farm milk for a while, but the store milk (trust me, we have heard about the differences! :-)

Someone would stop by and take the kids to Scouts.  Our eldest daughter and family friends did a lot of driving around and errands for us.  And my family -- my sisters and my parents -- helped when they could

I mostly just let the household run itself.  Being in a (non-paying) tech startup at the time, I had a freedom of schedule that allowed me to work where and when I pleased, and that turned into a major blessing at that moment.  But I still feel a little guilty about that, especially worry about neglecting the kids too much.

Volunteer Works: During the Rehab I missed many meetings and events then, but I more than earned enough karmic credit to do that! Even though my Volunteer work makes me feel good by giving back, priority is always family first and that moment in Rehab was just such a time.   I've scaled back my Volunteering tremendously from just a few years before the cancer, and I sometimes look back and wonder that I was able to do all of that extra volunteer work while holding a full-time job!   Youth and Vigor and Stupidity, I guess.

Topics I Hope To Cover Later

Once you get started, there is always more to say.  Maybe soon I can get to these, but if not, we'll see Letting It Go above!

• Asking for Help is Hard.  I've never wanted to be a Burden!
• (Not) Planning for After
• The Cliches of Cancer - Caregiver Version
• After the Help and Volunteers stop coming: the perils of living too long
• Healthcare Power of Attorney - Taking the Burden
• Navigating the USA Healthcare twisty mazes
• Elderly Parents and Other Family Crises

*All Images from: commons.wikimedia.org

The Certainty of Uncertainty

There are so many difficult things about having Stage IV cancer.

Obviously, death is the first and foremost of these difficult things. No one wants to leave this world yet. And of course, the dying process itself is hard -- the physical discomfort and outright pain of dealing with your body failing, sometimes by inches, sometimes by yards, sometimes by tsunamis.

Emotionally, the pain is to have to say goodbye long before you thought those goodbyes would come knocking. The pain of leaving your children and your spouse is the most bittersweet of all; so bitter to have to say goodbye and to know how deeply your death will wound them, but so sweet in having had the tremendous privilege of coming to know and love them.

But between life and death, there's a whole lot of gray space. A whole lot of neither-here-nor-there space. A whole lot of unknown space. A whole lot of waiting. And a whole truckload of wondering.

And right there, in that in-between space of Don't-Know and Can't-Control lies one of my hardest spaces, the Uncertainty Zone.

I hate uncertainty. I mean, I hate uncertainty. I hate not knowing what's going to happen and how. I hate not knowing the best course of treatment to take. I hate not knowing the best way to handle all of the difficult choices and emotions. I hate not knowing how best to help my loved ones. I just plain hate not knowing.

That's probably because I'm a world-class worrier. From my PhD in Anxiety, I have learned that worrying is a way of asserting the illusion of control over what cannot be controlled. I know perfectly well that worrying doesn't change anything about tomorrow and cheats today of its joy. But it's hard to let go of that worry and just live fully in the moment, embracing the uncertainty of now.

Yet I don't really have any choice. There is no other place for me to be.

So all I can do is step into that place of grace, to move forward and dance with the fear, to accept the challenge and the gift of letting go and embracing uncertainty.

We are transforming. We are Becoming.

Until then, all we have is the Certainty of Uncertainty. Perhaps with time we can learn to make some peace with that.

Tremors and the Power of Palliative Care

Some of my most difficult cancer days, emotionally speaking, occurred a couple of months after I was diagnosed. I've had worse days physically, but one of my most difficult emotional/physical blows was due to hand tremors. Sounds innocuous right? But it wasn't.

Early in my cancer treatment I ended up in the E.R. with a collapsed lung and septic shock, among other things. That made me very weak. While I was in rehab to regain my strength I began having hand tremors and face tremors. At first they were only occasional, but gradually they became more frequent and severe.

Face Tremors 

In hindsight, the face tremors seem to have been tied to low blood sugar. I had been put on steroids after Whole Brain Radiation and the steroids sent my normal blood sugar extremely high.

So of course, they needed to treat me with insulin until we could get off the steroids. Discontinuing the steroids must be done slowly. So little by little they reduced the steroids, but it was hard to titrate the insulin to match.

Sometimes they got it wrong. Sometimes I could feel my blood sugar crashing, and the sure physical sign of it was the muscles of my face twitching. People could see my face twitching. That was the signal that I needed to get some food right away before my blood sugar tanked. The face twitching was a good signal of impending low blood sugar, like a canary in the coal mine. It also told us when my blood sugar returned to normal because the face-twitching would stop.

Low blood sugar often accompanied a physical therapy session, so we learned to take some extra food before P.T. But I often had a drop in blood sugar right before bedtime too. We learned to keep some cottage cheese and crackers or a half of a peanut butter and jelly sandwich at hand, just in case.

Eventually, as my steroid dose petered out, we discontinued the insulin. Before long, the face twitching went away. It had never been severe but it had definitely been noticeable; my kids would remark on it. I think it saved us some significant blood sugar crises. Still, I was glad when my blood sugar went back to normal and that symptom went away.

Hand Tremors

The hand tremors, however, didn't go away when my blood sugar normalized. They were a thousand times worse than the face tremors and even more noticeable. Long after the steroids stopped, my blood sugar returned to normal and the face tremors stopped, but I continued to have hand tremors. Something else was going on.

Instead of getting better, the hand tremors got more severe. They got so bad that they became exhausting and painful. They kept me from doing just about every activity, which I just hated. I was too physically weak to go for a walk, I couldn't focus enough to read a book, my hands were too shaky to work at a computer, and I could barely even sign my name. If I went out in public, people would stare  at me because of the tremors. I became very self-conscious.

The worst aspect of it was that my hands and arms got exhausted and sore from all the shaking. Each day my hands and arms felt like they ran multiple marathons. Even just watching T.V. or trying to go to sleep at night was problematic. Eventually I got some heavy hand weights so I could weigh down my hands enough to lessen the shaking. Or I sat on my hands to keep them still and give my poor arms a rest. I was truly miserable.

The Solution

My palliative care nurse was incredible. Everyone else assumed the hand tremors were a product of my cancer and general weakness, but she challenged that. She thought that the tremors might be a side effect of one of my medicines. She did some research and sure enough, one of the anti-nausea medications I was taking had hand tremors as a possible side effect.

Discontinuing anti-nausea medication was not an option. I regularly vomited from the side effects of my crizotinib TKI. My cancer meds weren't going to do me any good if I couldn't keep them down.

So she asked my oncologist to switch anti-nausea medications for me. I had been on compazine, and she had me switched to ondansetron. She also added a small optional dose of ativan to my medications in hopes that it would help relax me enough for the tremors to go away and help me go to sleep more easily.

It worked. The hand tremors went away! It didn't happen overnight; it took a couple of weeks for it to slowly wear off, but soon my hands went back to normal. Once in a great while if I'm extremely tired I'll get a little echo of my tremors, but nothing like what I had experienced before.

I think this shows that I have an underlying tendency towards tremors when extremely fatigued or if I'm taking that medication. Change the medication and change your life!

Ditching the hand tremors was the BEST gift I could have received. I could finally start doing things and living life again. I was no longer a passive wimpy little patient who could only wait around for death. I was still weak but at least I could hold a book and read again, write again, feed myself again, and fix my own food again. It was so meaningful to get back that small bit of independence! It made such a difference in my spirits and gave me the strength to persevere with my physical therapy. Little by little I recovered my strength, my ability to walk, and to just participate in life again.

All Hail Palliative Care!

I'm not sure anyone else would have even thought that hand tremors could be a side effect of a medication, but my wonderful palliative care nurse figured it out. This possibility never even occurred to me. Nor did it occur to my oncologist.

So now I need to put in a plug for palliative care. Far too many people delay or avoid getting palliative care because they think it is the same as hospice care. No, agreeing to palliative care doesn't mean you are giving up on life or that you are just waiting around to die. It just gives you more resources and assistance in living with cancer. It looks for ways to improve the quality-of-life things that make such an emotional and physical difference.

My health has improved enough that I'm no longer receiving palliative care, but I won't hesitate to start it up again when I need it. I doubt if my nurse will ever see this, but a giant Thank You to Nurse Christie and "Nurse Christies" everywhere! Palliative care can be truly invaluable.