Wednesday, January 29, 2014

Girlfriends Are the New Husbands

Today is one month since Jeff died.  The last month has been a blur.  I don't know how I would survive without the love and support of the people around me.

Those around me at this time in my life are unbelievably helpful.  They help me continue to breathe every moment of every day.  I know I can count on them to be there at any time of the day or night and that brings me such comfort, such a feeling of safety in this chaotic, anxiety ridden time of my life.  I don't only have one person to turn to, I can legitimately say I have three specific people who would literally drop everything and anything going on in their own lives and come running to me for anything I need. 

One girlfriend knows all things cancer related because her father died from cancer seven years ago and she's also supporting her widowed mother so I'm able to turn to her when I want to talk about how much I hate cancer and she GETS it.

Another is even more of a control freak than I am and she is my organizer.  She made all of the appointments and arrangements for the mortuary, the service, the grief support groups and social worker/counseling appointments that I have attended.  She just tells me where and what time and what to sign.

The other one is for anything else I need support with.  She's ready in a heartbeat to just sit with me, workout with me, and definitely always ready to have a drink with me.  She has become ridiculously protective and is almost like a bodyguard.  She lets people know about my husbands passing when I can't stand to tell one more person that day, she tells people what kind of mood I'm in before I arrive so the others know to be happy if I'm having a good moment, or supportive if I'm struggling.

These three specific girlfriends help me continue to breathe.  They are filling pretty much every emotional gap that I've encountered and have allowed me the opportunity to continue breathing, which has provided me the sustenance to grieve in a healthy way.

Since there are three of them, I don't have to worry about them getting fatigued.  They are not experiencing fatigue because I am able to not put the burden on just one of them. I spread out my need and they all have different strengths that help me when I'm weak.  Girlfriends are the new husbands.

Friday, January 24, 2014

People Say Stupid Things, They Can't Help Themselves, Forgive Them.

Again, I am an exhaustive reader and researcher of all things grief related right now.  One of the things I keep hearing about is how people around the one grieving may ask how the one grieving is doing but might only do so out of social norms.  They are hoping that the one grieving responds that they are fine or are ok because that's what they want to hear so they don't have to acknowledge their own feelings or they don't know how to comfort the one grieving. I feel like those kind of people are just afraid of the experience the one grieving is going through either because it is foreign to them or because it could bring up their own grief that they might not have properly dealt with.

So far in my early stages of grief, I've been fortunate to have so many people around me who ask how I'm doing and when I answer honestly, that I'm living moment to moment, they do not shy away, they do not change the subject, they do not cringe and look uncomfortable. They have been able to read my response, body language and tone and have so far been able to respond in a helpful way. 

One widow gave me a card with 10 phrases of wisdom that she came up with herself. Number 4 said "people will say stupid things, they can't help themselves, forgive them."  Fortunately, not very many people have said too many stupid things to me and if they have, I've been able to forgive them immediately or have forgotten the stupid thing they said. It bounced right off of me and, potentially, right back onto them.

I'm hoping that all this research about grief is helping me in dealing with it properly and in a way that is healthy.  There is nothing that I hate more than wasting time or doing something wasteful when something useful could be done instead.  Grief is so painful that I do not want to spend any unnecessary time or energy in anything that will prolong my grief.  And since grief is such a personal journey, I'm figuring out that nobody call tell me what is wasteful and I just have to figure it out on my own and be ok with looking back and potentially realizing that maybe NOTHING grief related is wasteful.  It is all helpful.


Tuesday, January 21, 2014

The Soul Decides

I was told that the soul decides who it wants around when it finally crosses over.  If the soul doesn't want anyone around, it will go when everyone is sleeping or out of the room.  If the soul wants a specific person around, it waits until that person can be there.  This revelation, again, reminded me that I'm not in control.

After 10 days in the hospital, we finally got my husband home.  Before the hospital he was like he'd always been.  Sick from whole brain radiation but recovering well.  He still had a voracious appetite and pretty decent energy.  He didn't need me to stay home with him, he was taking care of the house, our dog and cat, and even making me dinner.  Then BOOM!  He was able to walk into the ER unassisted, even though he was in so much pain from the adrenal gland tumor that had burst that was bleeding into his abdomen and the sepsis that was taking over.

Ten days in the hospital.  He went in on Dec. 12th and came home Dec. 22nd. I slept there all but two nights. I only left in the mornings to go administer finals to my students and submit final semester grades.  Other than that I never left the hospital.  The doctors made their rounds at the worst times, in the mornings while I was administering finals. Little did I know while I was passing out tests that what they were saying was that the cancer was much more aggressive than they thought originally since the tumor on his adrenal gland was not even present at the October CT scan.  They were now changing the timeline.  More like weeks or months, not years. He kept that from me for 4 days.  When the doctor finally called me at work to talk about his release and suggested hospice, I was horrified.  She said that he was ready to go home and he just wanted to be with me.  No, this is a little bump in the road I said.  He's recovering and getting stronger, he's going to start treatment again.  She wanted to schedule a meeting the next day to talk about our options. I asked him when I got to the hospital about what the doctor told me and he said he knew.  I asked why he hadn't told me if he already knew and he said he hadn't wanted to talk about it.  How can I argue with that.

We set up a meeting with the doctors to talk about options and I asked his parents to attend.  I feel like I ambushed them since they had been in the same boat as me the day before.  This is a bump in the road, he's recovering and getting stronger and he's going to start treatment again.  They took it very hard.  I felt so guilty but how do you tell anyone that their son has only weeks or months to live not years?  So I understand why he kept it from me. How could he tell his wife she would be a widow before the spring?

We only agreed to hospice because of the ability to quit and start treatment once he was back on his feet but we knew we needed a lot of help with him if he was going to be at home.  He is 6' 3" and 250 pounds. I asked his parents to move in with us.  We would set up the hospital bed in his man room.  They went to our house to make all the preparations.

Hospice is the best program.  They were still making deliveries at 9 pm Christmas Eve.  Pretty much every day we either had a doctor, a nurse, or a home health aid coming to the house and there was a 24 hour phone line where we could call and immediately get a nurse on the line and if need be, a nurse to the house.  We were scheduling physical therapists to come to get our big man back on his feet and out of that hospital bed and back upstairs into my bed.  He was just happy to be home.  I overheard him tell one of the nurses that there was nothing like home, the sounds, the smells, he was just happy.

He did pretty much everything we asked of him and he did it without complaint and most of the time with a smile on his face.  He was still on very high doses of pain killers so he slept most of the day but when he was awake we were doing leg exercises, we were trying to sit up.  But instead of getting stronger he was getting weaker and needed more pain medication.

We were hoping for 6 more months but we were starting to see the reality, he wasn't eating, he wasn't getting stronger but weaker, he was in more pain.  It was happening too soon.  We weren't even getting weeks, let alone months, it was looking more like days.  I was petrified of missing his passing.  I didn't want to leave the house, I didn't want to go to sleep.  His mom said the same thing.  We would never get over not being there when he finally went.

One of our close friends is Melissa and her mother is a retired nurse.  We call her Maka.  She had experience with hospice with her own husband and on a few other family members and close friends and she had offered up her services to us. She had just taken her sister in law up to a monastery to become a nun and had spent two days at the monastery praying with them.  Her first day back she asked if we needed her.  She arrived in the morning and I told her about my fear of not being there when he passed.  She told me that the soul decides, we have no control over it.  That relieved so much anxiety because I knew it was up to him, not me.  Another reminder that I am not in control.

Maka must have seen the signs that we were oblivious to because she just kept staying.  He was awake in the morning but as the day progressed we just couldn't get him awake enough to take his oral pain medication.  Maka switched to the liquid form to help control his pain.  She had stayed all day and said she would stay the night.

He couldn't speak to us that day but he was still communicating.  Maka was holding his hand and he let go and reached down and started patting her butt.  She said "Jeff, I'm not Katie."  His hand shot straight up into the air!  I came in a few minutes later to hold his other hand and he let go and felt around on my chest until he found my boob.  I said "yup, that's my boob." He squeezed it twice!  That was my husband!

It just so happened that Melissa was coming over that afternoon.  Melissa is one of my husband's favorite people besides Jessica.  Melissa and Jessica both were there that night.  Maka heard the death rattle around 11 pm and told me to wake up his parents who were sleeping upstairs.  We were hovering over him telling him he could go as he struggled to breathe and I realized that he was going to wait until the 29th, which is his favorite number.  Maka told us that it would be a few hours and to get some rest.  She sent his parents upstairs and I stayed in the recliner next to the hospital bed, while Jessica and Melissa were in the living room.  I dozed off and on and from12:30am to about 3:30am, Maka never moved.  She stood next to his bed and held his hand and talked to him the entire time.  Around 3:30 she told me it would be soon and to get his parents.  I laid across the top of his bed, right above his head, and stroked his forehead and cheeks while his parents and Maka held his hands as he continued to struggle.  At one point he became very calm and his breathing changed and instead of labored breathing, he was just sighing and was very peaceful. Maka and his parents sat back and Maka started asking about our wedding.  I went and got our wedding album and his parents started telling wedding stories.  I continued to stroke his face and whisper to him while listening to them and then he took his last breath and I felt his heart stop beating.  5:15 am Dec. 29, 2013.

The soul decides and his soul chose to go at that moment.  He hated being the center of attention but he wanted specific people there.  Maka's boyfriend had had the stomach flu and when she finally went home that morning, within the hour, she was sick.  He knew we needed Maka to help us get through it.  He wanted Jessica and Melissa there, but he also didn't want people hovering over him.  He waited until they were all just a little distracted while his mom held his hand and I was watching.  I feel so selfish saying this, but I truly felt like it was just me and him.  It was so peaceful and intimate.  He made sure I was surrounded by people to take care of me and support me but I feel like he chose me to share that last moment with him. I'm so grateful he chose me.






Monday, January 20, 2014

The Past Is Just a Story We Tell Ourselves

I haven't been to the movies by myself since we moved into our house five years ago.  The other day, I went to the movies by myself.  I went and saw "Her."  It's essentially a story about trying to make an intimate connection.  The main character makes a connection with an operating system.  He doesn't do it intentionally, the relationship just evolves.  I felt like I could completely relate.

I am alone and I feel like my soul is desperately missing the connection I had with not only my lover, but more importantly, with my best friend.  The person who knew me inside and out, who knew all my little idiosyncrasies, who knew my irritations and obsessions, who knew how to handle me when I was whiney or bitchy, who always knew the right things to say to talk me off the ledge and to calm me down when I was overreacting.  I desperately miss my best friend, my other half.  I used to think people were so cheesy when they would ask "where's your other half?"  But I get it now that my other half is gone.

I also get how widows and widowers sometimes don't wait very long to get into another relationship. It probably has nothing to do with how little they loved their partner that passed but more to do with how much they loved being part of a whole.  They are searching and grieving not only their loved one, but also the loss of that intimate connection they once had. I love my husband dearly but I can feel my soul searching and yearning for that connection that has disappeared. But I also know myself. Even if I were able to find someone I could tolerate, eventually all I'd feel is anger towards them because they are ultimately not Jeff.  They would not respond to me the way he did, not because they wouldn't be trying, but simply because they are not him, there will never be another him.

"The past is just a story we tell ourselves."  I loved this line from the movie.  My husband was not a saint and the stories I tell of him are usually not the most flattering.  I tend to tell the stories that are the most hilarious and he was a hilarious man so there are so many.  But this line from the movie could not be more true.  The past is a story.  Sometimes, stories evolve and change as we tell and retell them.

Sunday, January 19, 2014

Good Morning?

I hate being a widow and I really hate cancer for making me a widow.

I also really hate how many necessary people there are to tell that my husband is deceased.  I hated telling family and friends.  It really sucks royally to just ruin people's days like that.  I hate having to console people when they find out the news from me, the widow herself.  I hate having to make all the necessary calls to Social Security, his employer, my employer, insurance people, the mortuary, banking institutions, credit card companies, cell phone company, our dogs groomer, the DMV, and every other necessary person who needs to know.  I just want to grieve in peace, but there are so many things that need to be taken care of in the days following the love of my life leaving me forever.  So many stupid, yet necessary, worldly things.

Brand spanking new widows rarely have a good moment, let alone a good morning.  Mornings, if they are lucky enough to have gotten ANY sleep at all, just remind them of the fact that they are alone.  I'm trying to have a good morning and then I remember the long list of bullshit I have to take care of before I have to go back to work since they only give you 3 days of bereavement. Like any widowed person in their right mind would be capable of thinking even remotely clear after only 3 days!  Luckily, I could afford to take off extra time, although as my report-back-to-work date is looming, I'm not sure if 3 weeks is enough.

This morning I took our dog into the groomer.  Jeff was the one who took care of that so of course I got lost going there because if anybody actually knows me, they know I'm geographically and directionally challenged. That's why I married a UPS man who knew the zip code to EVERYWHERE and could tell me how to get anywhere in the entire county.  Then, after I finally get to the right groomer, they of course only have his information and I had to inform them that he is deceased (did I already mention that I hate telling people this) and they of course are horrified and I get the head tilt with the sad eyes, which always starts the water works.  I don't do well with sympathy.

I thought I was having a good morning but nope, good mornings are not in a widows forecast.  We, instead, get to go directly to jail, without passing go, and without collecting $200.  Talk about a shitty card to be dealt.




Friday, January 17, 2014

The Black Hole of Grief

"It has been said that time heals all wounds, I don't agree.  The wounds remain. In time, the mind, protecting its sanity, covers them with scar tissue, and the pain lessens, but is never gone."
-Rose Kennedy.

One of the members of the very first bereavement group I attended recited this quote.  She also lost her husband to lung cancer, but she is in her 50's or early 60's and she lost him two years ago.  This kind of freaked me out because it hasn't even been a month since my husband passed away and she, two years in, is still in the deep black hole of grief.

In the beginning of grief, which is where I am, I've heard and read that it gets worse before it gets better.  Dear Lord, how will I be able to handle anything worse than what I'm experiencing now and is this what I have to look forward to in two to three more years?  I felt ancient instantly even though I'm only 34.  Maybe all of this optimism and gratitude that pulls me out of the black hole that threatens to engulf me will slowly fade throughout the years and the black chasm of grief will take over.  I hope and pray that it doesn't, but my research is saying otherwise.

Wednesday, January 15, 2014

Anger vs. Gratitude

The five stages of grief in no specific order: denial, anger, bargaining, depression, acceptance.

I want to talk about anger today.  Now for most people, cancer and anger are synonymous. I never experienced anger. Not when my husband was diagnosed with stage iv lung cancer on his own 37th birthday, not when he was sickened and weakened by radiation and chemo over and over, and so far, not since he took his last breath and his heart beat for the last time December 29, 2013.  Now I'm not saying that I will never experience anger in this ridiculous journey called grief, I'm just saying I haven't experienced it yet.  And I am very well aware that I'm practically still at the starting line of my own grief marathon.

The one thing I am realizing through all of my extensive research, hearing, and reading of all things grief related is that my husband's death, although way too sudden, was still something we knew was on the horizon.  We were hoping distant horizon but we could see it looming nonetheless.  This allowed us to truly appreciate our relationship and each other.  I always thought that we had a strong relationship before cancer but our relationship grew tenfold after cancer rained on our parade.  I was allowed the opportunity to tell him everything I needed to tell him, I left nothing unsaid.  I was also allowed the opportunity to hear everything I needed to hear from him.  I feel complete in knowing I was his world as he was mine.

So these last couple weeks I feel no anger, I only feel gratitude.  Gratitude that he chose ME to be by his side until the very end, through richer or poorer, through sickness and in health, till death really did do us part. Gratitude that even though we only had 10 years together, those 10 years were filled with a true connection, a bond I've been told others have never experienced in their lives.  Hearing people speak of our love and commitment to each other at his celebration of life, it was evident that others were in awe of our relationship and saw it as something to strive for in their own lives.  I had no idea the impact we made on others, all I knew was our impact on each other.  I have no regrets.  I loved my husband, tumors and all.  The pain I'm experiencing now and the pain I know will continue in the future is so worth what we had.  Knowing what I know now, I would still do it all over again.  He is worth every ounce of suffering I have endured and I will continue to endure in the future.  I am so grateful that he chose me.  I am so grateful for our life together.  I  am so grateful that I experienced a love, a connection so strong that it rocked me to my core.  And with him gone, a void so massive has been created, but I still have no regrets.  I only have gratitude.

But don't get me wrong, I still hate cancer for making me a widow.


Monday, January 13, 2014

Control Issues

Widowhood is an exclusive club that no one in their right mind wants to join. It is a club that is joined out of the necessity to continue breathing.  Widows need each other to survive.  These sound like such desperate statements but new (and maybe all) widows tend to be desperate people.

Meetings with social workers, bereavement groups, therapists, grief literature, and other members of the exclusive widow club all talk about the length of time and the amount of work that goes into grieving. They all talk about the timetables for grief and the stages of grief and then they all mention that each person is unique in his or her grieving.  This is all so ridiculously hard for me because I am an analytical, information obsessed type of person.  I want definitive, concrete information about what is happening to me and what I can expect down the line.  I have never liked or felt comfortable not being in control.  I am quickly finding out that there is absolutely nothing I can do to even come close to being able to control anything about my grief.

This lack of control over my grief should not be news to me though. I had absolutely no control over the fact that my husband was diagnosed with stage iv lung cancer either.  This is pretty much my reaction after he was diagnosed ON his 37th birthday: MY husband has cancer?  What do you mean MY husband has cancer? No, no, this happens to OTHER people not me.  MY husband is young and vibrant and has a very active job running up and down stairs and carrying very heavy packages in his ugly, yet sexy brown uniform.  He has never been short of breath, he has never smoked, he doesn't have a persistent cough, and he is not experiencing any form of fatigue.  I am a great wife who is constantly nagging him about taking his vitamins and his blood pressure medications.  I make sure he is eating well and is getting plenty of sleep.  There is no way that MY husband falls into a statistic where there is a less than 1 percent chance that he won't survive 5 years.  We just got married a year and a half ago!  I just got finished changing my name!  AND today is his birthday!

Oh the anxiety that followed is nothing that I have ever experienced before.  Anxiety is caused by my feeling out of control.  I was definitely not in control.  Throughout the next 14 months of radiation and 3 different chemos, we tried desperately to have a say in controlling our lives.  Where and when we traveled, where and when to meet up with family and friends, each day, especially near the end, when the brain mets reared their ugly head and whole brain radiation took its toll, we tried to have a say.  But, alas, I was definitely not in control.  I hate that cancer made my husband a statistic and I hate cancer even more for taking him away from me.  I am not a fan of losing control.

Sunday, January 12, 2014

Lucky Me?

Who doesn't hate cancer?  Anyone who has experienced cancer in any way knows the trauma of cancer.  My story is how cancer made me a young widow.  

My husband is the love of my life and notice I am not using past tense verbs.  He IS the love of my life.  I was lucky (notice the past tense verb here) that he chose me to share his life. So lucky that I chose "Lucky" by Colbie Caillat and Jason Mraz as our first dance at our wedding.  We were married April 8, 2011.  His heart stopped beating at 5:15 am December 29, 2013.  My favorite numbers are 8 and 12 and his was 29.  Sometimes when I explain the significance of those numbers, I have to shake my head because my husband was never a planner.  But somehow his soul planned.  Maybe luck is a matter of perception?