The C Word – Questions

In the past four and a half years, there have been a lot of questions.  Questions we have for the doctor.  Questions we ask ourselves.  Questions others ask. Questions we ask God.  For some we receive good answers, some not.  For others we give good answers, but not always.  And then there are those questions we have a programmed response for which is not necessarily an accurate one.  Here are some examples of the questions which have become familiar: 

1.  How are you? (George)

The answer to this question is variable and may depend on who asked the question.  For acquaintances it is less likely to be 100 percent truthful. 

George often has programmed responses when asked this question.  Typical responses have been and are: “Could be better, could be worse, middle of the road is okay with me.”, “I’ve had better.”, “So-so.”, “I’m doing okay.”  None of these are clear indicators of how he is really feeling.

Only in recent months has he started to tell his closest friends something that is closer to the truth.  “I’m not having a good day.”, “It’s been a rough week.”, “I’m tired of being tired.”

I can generally tell how he’s doing but sometimes even I need to dig deeper.  I can see he is constantly exhausted, sometimes experiencing discomfort, mentally struggling with all that is going on.  Grappling with the progression of the disease. 

2.  How are you? (Dawn)

Again, the answer given may vary depending on how close I am to someone or how much I’m willing to share.  I, too, have programmed responses.

“I’m doing okay.”, “I’m doing the best I can under the circumstances.”, “Fine.”, “I’m keeping busy.”

For the most part, these statements are accurate.  I am honestly doing the best I can given what is going on.  I do manage to keep busy, though for the first three months of the year it was busy just trying to keep up with and manage all the changes going on with George. 

I don’t feel stressed out, but my body will tell me differently sometimes.  I take more naps now than I used to (actually, I give in to when I’m feeling tired instead of fighting to keep my eyes open).  I started to get shingles (which I understand can be stress induced).  Fortunately, I caught it early and it didn’t do a full-on break out and it was in a place that was manageable to deal with (my arm).  My blood pressure is also not totally under control even with medications, a definite indicator of stress (and lack of exercise).

I struggle to find the balance between my needs and George’s.  For three or four months I was able to develop a morning routine which was comfortable and allowed my “my time” to take care of myself.  All of that came to a halt, in part due to things at home and in part due to weather (rain) and season (too dark early in the morning).  Once the routine is broken, I find it very difficult to start back up again. 

I am trying to do some things for myself health-wise.  In January, I had surgery on both hands for problematic trigger fingers.  Though my fingers do not trigger any more, there is still some pain at times associated with it but eventually it will go away.  Earlier this week I went to an ENT for a problematic sinus issue and found out I have a deviated septum and likely seasonal allergies (which never were a problem for me before).  It is likely I will have a minor procedure to fix this sometime in May. 

Last year I was diagnosed with mild clinical depression and am in on-going treatment for help with it.  The many years of being a caregiver have taken their toll on me.  I’m sure this is not a surprising fact to others in the same situation.

3.  Is there something I/we can do for you?

When someone is diagnosed with cancer, others feel the need to do something.  They don’t know what and, early on, we don’t know what they can do either. 

Food?  Food is probably the major thing that people feel they can offer and is often the first thing they come up with.

After the first surgery, meals were arranged for us.  The only problem was, George wasn’t in the mood for food as his taste buds were off.  This meant the meals brought to us were consumed only by me.  He never got to enjoy one single meal.

Periodically we’ve had people bring us things to eat.  Since George’s diet has changed depending on what he was experiencing at any given time, the response to this question has also varied.  I don’t want tons of food which will go to waste if I don’t eat it (or go to my waist if I try to eat it all), so small portions are good - and if it can be frozen for a later date, even better.  I’m pretty simple when it comes to food and, in the past two months, I have found the wonder of grocery delivery and DoorDash!  I’ve been consuming some of my comfort foods (probably way too much lately).

Help around the house? I’ve never been a clean freak (just ask George) so my priority has never been to have a clean and spotless house.  I drive George crazy because I have projects in the living room, things I keep close to my chair so I can pick them up when the mood hits – even if it may be weeks before I actually tackle them.  I can manage a vacuum now and then, a dusting now and then, spot clean the bathrooms regularly, etc.  I love to go pull weeds when I’ve got the time as it is good to be outdoors in the sun.  So the routine things about keeping house are okay, I don’t need help. 

I have learned to ask for help when there is something I can’t do.  A repair that I can’t do.  George feels bad that he can’t do them because this was his job.  Nowadays, depending on what the problem is, I either ask for help from a friend or I call in a repair person.  Recently I hired a plumber to fix a shower leak issue.  A neighbor had offered to help and had tried but couldn’t fix it (which was so nice of him to offer) – but he also recommended a repairman.  We’ve had a bunch of issues over the past six months and it’s cost a pretty penny to get them fixed by professionals.  I’ve learned to assess the problem and handle the repair in the best way I can. 

The best response we can give to this question is that we can always use your prayers.  Prayers are never a waste of time in our books. 

4.  Is he up for visitors?

The answer definitely varies.  It has depended on where he was in this journey. 

These days, visitors are a nice distraction – but anything more than an hour or two in a day is tiring for him. It’s better when the visitor is able to chat with both of us so if George feels the need to nod off, he can.  People have been good about checking in with me first.  They always worry they will wake him up.  Honestly, anyone coming over even for a scheduled visit may wake him up as that’s what he primarily does most days.  Unless he is having a particularly bad day, being woken up is okay.

5.  How has this impacted you? (George)

Mind you, I am speaking third person here.  I am making commentary based on things George has said or that I have observed. 

Impact #1:  Shortly after diagnosis in 2014, what I observed was a man who had difficulty trying to discern what to do.  I had to take control of making appointments (something I’ve done ever since then).  He has always been the type of person who needs to mull over, think about things or digest things (his words).  Sometimes he takes his time to do this – sometimes to his detriment.  Then I have to step in and nudge him forward as he gets “stuck” in his brain.

Impact #2: In the past five years, he has needed to relinquish his driving on multiple occasions.  After surgery in October 2014, he didn’t drive for about three months.  After he broke his neck in December 2015, he didn’t drive again until April 2016 only to stop again after cancer surgery in July 2016.  Then he stopped again until December.  In August 2017, after he passed out due to dehydration, he stopped again and except for a few occasions, has not driven since then.  This is difficult for him.  He was used to being in control of the steering wheel.  He was used to running errands on his own. He’s not comfortable driving because of his fear of passing out or having something happen, but he does not want to give up his right to drive just in case he needs to do so sometime. Driving is one of the major players in ones’ psyche.  None of us ever wants to give it up.   This year the DMV is requiring him to take an eye exam and come in person to the DMV to renew his license.  Yet, signing up for an appointment is likely to fall to me. 

Impact #3:  Perhaps the biggest impact this disease has had is in his ability to continue his career.  Giving up his job to go on long term disability wreaked havoc on him in the beginning.  For men, their jobs are what they feel defines them.  It’s something they have done for their entire lives.  It gives them a sense of pride and accomplishment.  To suddenly be faced with the prospect of not working breaks their spirit.  They are used to being the bread winners, taking care of their family.  If they can’t work, then who are they?  (This could be a dilemma for women too, but maybe not to the degree it is for men.) 

Stopping work leaves them with a lot of time on their hand.  George was lost for a long time.  He didn’t know what he was worth anymore (and still has problems with that issue).  “What good am I?” he sometimes asks.  As the disease has progressed and his energy levels have gone from okay to non-existent, he fails to see his value as a man, a husband, a helper.  He feels worthless in a world where he used to be in charge.  He wonders how anyone could love him and often asks, “Do you love me?” and “Why do you love me?”  The answer is “You are still the same man on the inside.  You still are kind.  You still are a man of integrity and honesty. You are still a man of faith.  Those things have not changed despite your physical transformation.”

Impact #4:  Over time his memory has diminished, his ability to find words or names at times can be challenging, his sense of day and time sometimes wane.  I’ve observed George go from a confident, take charge kind of person to someone who has little confidence and no longer even tries to be in charge.  I have been in charge of his medications as well, something constantly changes.  He is not able to keep track of these, let alone remember the names of the medications, especially newer ones.

6.  How has this impacted you? (Dawn)

I’ve always believed that the experiences one goes through over the course of their lifetime is for a reason.  “Teachable moments.”  We may not like them or understand them, but we still have to go through them.  I think my believing this has truly helped me with all of the twists and turns which have taken place in my life.  Some people don’t understand it, can’t believe how I stay positive through tough times.  For me it is simple, I have a God and I have faith and trust that He will help me when the going gets rough.

It goes without saying, then, this same truth applies to this circumstance… this journey through the “C” word. 

Impact #1: I have truly had to learn how to navigate a world totally foreign to me.  I’ve never been a technical person or one who understands the world of science, so although I’ve had to try to understand some of the things about Pseudomyxoma Peritonei and Appendix Cancer, I will never be an expert and I do not wish to learn about all the facets of this disease (I marvel at those folk who understand the various kinds and can speak with great knowledge about them and the various treatments).  I should also note I should never use the word “never’ – because sometimes God will turn those words upside down on me. 

What I have learned is everything I need to know about George and his disease.  I am an observer.  When George is in the hospital, I watch the nurses, I listen to the doctors and the nurses.   Over the past five years, he’s been in the hospital for more than 80 days!  For many of those, I’ve stayed with him day and night.  I’ve also gone with him to countless doctor appointments – surgeons, oncologists, etc.  I take notes.  I ask questions.  I am very well versed in his care to the point some people will ask if I’m a nurse.  My answer is always, “I don’t care how much knowledge God gives me and makes me learn regarding George’s care, I DO NOT want to be a nurse.”  It doesn’t mean that somehow God won’t use what I’ve learned somewhere else down the road.  He is not done using me yet!

Impact #2: Between caregiving first for Etta (from 2006-2016) and George (from 2014 to current), the ability to plan for anything has been difficult.  It’s been thirteen years of trying to make plans, hoping that they work out.  Nothing could be done impromptu when Mom was alive as we always had to make sure it worked out in Rosemary’s calendar.  When George was diagnosed and I had double duty for two years, my brain was on high alert 24/7 (and coupled with that was the fact I was working 30 hours a week).  I used my vacation time to stay with George for his multiple overnighters.  Since leaving my job in April 2017, we had hoped to be able to do spur of the moment things such as a weekend away.  However, this never came to fruition as George’s health deteriorated.  In the past 10 months between chemotherapy and wound issues and now having to administer TPN and clean a gnarly wound every day, getting away is impossible.  It seems every time I make plans to be away for more than half a day, something happens with George.  He’s landed in the emergency room two of the three times I’ve gotten away.  Between December and late March he was either in the hospital or at Dr. B’s office every other week.  Now, with TPN, I can get out for a few hours here and there when he is not connected to his TPN infusion. 

Caring for mom was like having a three year old in the house.  It often meant that I would be awoken nearly every night as she made at least one trip to the bathroom and I had to listen to be sure she got there and back without falling. Every night and every weekend I juggled between her place and ours to ensure she ate, drank, got ready for bed, took her meds, etc.  It’s no wonder I can’t sit still as I’m so used to having to get up often to tend to someone’s needs.

All of this has made me learn to be patient…. I am typically a patient person, but every once in awhile I yearn for something more.

Impact #3: Wife versus caregiver.  I wrote about this in a blog some time ago.  The lines between wife and caregiver can be very blurry.  Moving between the two of them like a game of tennis, bouncing back and forth over the net.  More often than not, I feel like a caregiver more than a wife – in the traditional sense of a wife anyway.  The longer time goes on, the more distant it becomes.  Aside from holding hands and occasional snuggle time, I give more than I get as his needs take precedence.  The love is still there – the passion long gone.  This disease has taken its’ toll, has become all consuming of any energy we have to put into a traditional husband/wife relationship. 

Impact #4:  Household duties and Bill paying.  More recently, everything pertaining to the house has become my responsibility to not only take notice of but to take care of.  Small tasks that George used to do have fallen to me.  Some I can fix, others I have to find someone to help with – often meaning we are paying a fair amount of money for the repair.  Bill paying, once something George dutifully did, paying bills the moment they came in, now is my duty.  George rarely will even go into the office, let alone take the five or ten minutes to log on to his computer and pay the bill.  For the first time (well, maybe second) since we’ve been married, I did the taxes.  This is not too difficult as we use TurboTax and that expedites everything.  This means that I am:  wife, caregiver, bill payer, household overseer, nurse.  It’s no wonder my brain rarely turns off as it is trying to plan for everything that may need to be taken care of.  I am a proponent of keeping a pad with a list of the things “to do” because if I don’t, I will surely forget something. 

 

QUESTIONS FOR GOD

1.  Why me?  And Why this cancer? (George)  George often thinks about these questions.  We will never know the reason why or why this cancer.  Yet it is something he ponders.

2.  Why would God do this to my mom twice?  This is a question I know both of my daughters ask themselves. 

This is what I believe… God put me into the lives of two men who needed me. One who came from a broken family and needed a woman whose easygoing temperament could balance out his various and assorted behaviors. From this relationship I had to learn how to keep us afloat as he loved to spend, I witnessed a person who could play like a child but who was a quick learner for all things mechanical and a dedicated worker. This man gave me two of the greatest gifts on earth, my daughters.  He taught me the power of resilience, of overcoming ones past by learning to do better, be better.  He showed no prejudice towards other races (only stupid people, LOL).  And I, in return, showed him compassion, helped return him to faith in God, stood by his side even when things were difficult for us.  He was taken from this earth far too soon for our liking.  It was like the carpet got pulled out from underneath us and it took us a long time to find our balance again.  He would not like us to give up on life, to give up on love, to give up on each other.  He would want us to go on.

After Mike’s journey was done, He put another man in my path. This man needed different things. He, too, was broken but in different ways. He needed someone he could learn to trust to be there for him. He had a daughter that needed a mother figure.

He ended up having a mother that needed help. Help I could offer willingly because I had the time. Also, if it weren’t for her, I wouldn’t have this home I live in. In a weird, twisted sort of way, Mike also helped me live in a home with something I had told him about when we were dating… I wanted a house with a white picket fence.  Due to the circumstances of his death, he did help me find and purchase that home – just without him here with me. 

Ultimately, God knew George would need a partner to take care of him when diagnosed with cancer. Without me, he would not be able to live.

He taught me how to better manage money. He had a salary which allowed us to maintain a beautiful home and provided health insurance to cover sooo many things. 

God has given me the strength to be what these men needed. I believe I was brought into their lives and them into mine for reasons that are bigger than me.  He was using my talents to be the partner they needed – and they were the partners I needed as well.

Between both men, I will be able to live debt free and not have to work for the rest of my life. I will be able to do things I never imagined. 

That is the gift I have been given... to be loved by two men, to be financially independent, to have three wonderful daughters, to know I am now more than capable of living my life when they are gone in a way I never imagined.

My faith has kept me strong to handle everything that’s been tossed my way. In my lifetime I’ve had to learn unimaginable patience, to learn to set aside prejudices, to rise up and do whatever it takes to allow loved ones to be at home despite their illness. I’ve learned these not only from these two men, but from my family, my children, my friends... 

I know there’s a higher being watching over me. For me it us God. I pray my children find a what works for them. Maybe it will be God, maybe from another spiritual guide. One thing I’ve learned, is that with God in your life, you will always be able to find a way to keep going, to muster through the bad times and to recognize the good times and appreciate them.  Our children have (or are) struggling with those because all they can see is this bad thing is happening to their mom (and to them).  We don’t always know the  “why” of things.  Sometimes we find out later, sometimes the question is never answered in our lifetime.  But with God, with Faith, with Love and with Hope, I know for a fact we can not only make it through tragedies, we can come out stronger on the other side of them. 

I can understand my children’s anger at God.  Yet I know God still loves them and one day will show them what it feels like to be at peace, to give them back their faith and their hope. 

QUESTIONS BETWEEN US

1.  What’s going on in your head? Or Where is your head at?

I often look over at George and he is staring off into space.  Or he is lying in his chair, eyes covered, yet not asleep.  I can sometimes tell he is struggling with something by his demeanor.  So I’ll ask him these questions because I’ve learned if I  ask, he will keep things bottle up inside and that’s not good.

2.  How are you doing? (George to Dawn)

He asks this of me fairly regularly. He wants to check in to see if I’m particularly stressed or feeling burdened. 

For the most part, I am doing pretty well.  I go through periods of time where I can’t seem to get my focus back – especially if there’s been a marked change in the schedule for caring for him or if we’ve spent time at the hospital, etc.  I’ve learned to set my self-expectations fairly low for the time being.  I do what I can when I feel like it. I don’t feel guilty that the house isn’t always clean – it’s not important right now.  If I’m tired, I’ll take a nap.  If I’m ambitious, I use the momentum to get things done.  I use my constant “to do” list as a guide and pick things based on what I feel like getting done. 

The hardest thing for me to do is to not only make the time to get some good exercise in, but to feel like doing it.  Once I get off track, it is very difficult to re-insert it into my life.  I’ve had to reconcile to be okay with not exercising for the time being, because I have to preserve my strength to just get through the day.  My brain muscles can only do so much. 

3.  What are you afraid of? (George)

I know the answer to this because we’ve talked about it amidst ourselves and with others. 

George is afraid of dying.  He is afraid of what is coming down the road. Pain. Fear of leaving me.  Of leaving his family.  Fear of losing control of bodily functions.  The process of dying.  All of this is an unknown – so fear is normal.  That doesn’t make it any less scary.

4.  What are you afraid of? (Dawn)

I’m afraid of having to watch him suffer.  I pray when it’s time for him to go it is swift and without pain.  He’s suffered so much these past five years.  He is a shell of the man I used to know. 

5.  Will you be okay? (G to D) 

I am not afraid of being alone because I have felt somewhat alone for awhile now.  He is physically in the room, but he is mentally not here.  God has been preparing me for what is coming.  As mentioned above, I will have all that I need to live life in the way he wanted me to – “top cabin”.  I’m sorry that it won’t be with him.  He always wanted to take me places, but his body failed him much earlier than expected. 

6.  How do you think things will change/be for you when I’m gone? (G to D) 

For the first time in over thirteen years, I will have only me to answer to.  I won’t have any restrictions for when I do things.  I can travel to places I’ve yearned to go to for a long time.  I will be able to spend more time with our children and grandchildren, more time with my sister or other friends.  My time will truly be mine. 

7.  Will you miss me? (G to D) 

Of course, I will miss you.  Probably more than I think I will.  In some ways, I’ve missed you, missed us for the past few years as you’ve slowly melted away before my own eyes. I’ve missed: you tinkering in the garage on some sort of project, you building some amazing things in the backyard, your taking care of the things the ‘man of the house’ generally does.  I miss the intimacy we once shared.  I will miss holding your hand, snuggling up to you while we watch TV in bed.  I will miss fighting over control of the TV programs. 

Yet, I will always hear your words in my head, your sage advice:  “Be safe, Dawn.”  “Drive safe, Dawn.”  “Don’t give out your personal information.”  “Always set some money aside for a rainy day.”  “If you save your nickels and dimes, the dollars will take care of themselves.” (hmm, that doesn’t sound quite right, but it is along those lines.), “lock the door even when you are home”…

8.  I know I don’t have the right to ask, but I don’t want you to marry again

After Mike died, there was no doubt in my mind that I wouldn’t marry at some point.  I was still young, only 43.  I still had a lot of good years in my life.  I still had a lot to offer to someone else.  I wasn’t fully looking for a life partner when I met George (it was just a few months after Mike died).  I was looking for companionship beyond my circle of friends and acquaintances.  Someone who might be able to listen to me without the sad look that my friends were giving me.  God sent George.

Now, at 62, I am at a different place in my life.  These past few years have been tough for me as a wife. I need time to recover from the losses in my life.  I need time to chill out and just “be” for some time.  Tongue in cheek I tell George – “When you are gone I will have buried two husbands.  I do not want to do this again.”  I am done.  I am burned out.  I have no desire to have a close relationship with anyone else.  Not right now. I can’t say never because I don’t know what God’s plan is.  It will be time for me to be selfish.  To think of myself and my needs.  To do whatever my heart desires.  To let my hair down and have some fun. 

I pray that God will allow me that time.  Time with my family to heal from the past thirteen years – years where I’ve been a caregiver, years where I lost my parents.  Years where I’ve watched people I love deteriorate before my very eyes.  That He will provide me with good health for a long time to come.  That He will put new people in my life to have fun with, to do things with, to go places with.  That He will allow me to just “be” for as long as I need it.  That’s what I pray for.

 

My last question to God is:  Will You give me a long and healthy life to continue to serve You, to continue to live my life to the fullest extent possible?  I wonder what the answer will be.