Friday, March 7, 2014

Coping with grief

It has been a very long time since I posted last, but there has been a lot going on in my world.  I had a great run last Tuesday at lunch and I was all set to post about it when I got a phone call I was dreading.  My dad's friend from church, Shirley, called and I missed her call.  She left a voice mail and once I got Jack to sleep, I called her back.  Luckily, my mom had stopped by for a bit and was still at my house because Shirley had called to tell me that his doctor's appointment that day had not gone well at all.  The doctor said that my dad did not have long to live.

I've been a little vague about my dad's illness out of respect for his privacy, but he essentially had an issue with his pacemaker that led to his hospitalization in the middle of January.  While they were working to fix his pacemaker (replacing the battery and a lead wire), the ran a bunch of other tests and discovered a suspicious spot on his liver.  After a biopsy, they discovered he had a malignant melanoma on his liver.  About 6 years ago, he had retinal cancer (which I've now learned was ocular melanoma) and it metastasized to his liver.  He visited an oncologist the second week of February and the oncologist said he had stage 4 liver cancer and there was nothing that could be done, at which point, Nick and I made a trip to Ohio to see him.  We had a good visit and during that visit, we discovered that the oncologist wanted to run further tests to see if my dad was eligible for a cutting-edge treatment.

Two weeks ago Thursday, he had a bunch of tests run, as well as last Monday.  On Tuesday, he went to the oncologist to begin his first treatment and the nurses had started his iv to begin an infusion.  At that point, the oncologist came in and pulled Shirley, who had accompanied him to the appointment, to the side.  He said he was sorry, but nothing could be done and the prognosis was "not good at all."  Shirley said that my dad's family lived out of town and asked the doctor if  he meant that she should call his family to have them come up.  The oncologist said yes and that he would be surprised if my dad made it through the weekend.  I found out after I got to Ohio that the oncologist actually had said he thought it would be more like 2 - 3 days.

I broke down that night and was pretty inconsolable for much of the night.  I decided that I was driving to Ohio the next day (Wednesday).  I know that doctors can be wrong with their prognosis, but I wasn't willing to take the risk and I knew I would regret not going to see my Dad.  It was hard seeing him a few weeks ago because he was a shell of the man I remember, but I knew I needed to be with him.  I had planned to go by myself, but as I was getting ready to leave town, I realized it was not a good idea for me to go by myself and my mom said she could come with me.  I was so relieved that I didn't have to make the trip on my own and my mom was a godsend.  We drove to Dayton on Wednesday  night and finished the drive to Canton early Thursday morning.  The closer I got to Canton, the more my nerves set in.  I was afraid that I wouldn't make it in time; I was afraid of how my dad would be when I got there; I was sad because I knew it was likely the last few days I had with him.  Shirley had asked me on Wednesday afternoon if my dad knew I was coming and I told her he knew.  Honestly, I told him on Wednesday because I wanted him to know I was coming so that he could hold on until I got to Ohio.

When I saw my dad Thursday morning, he didn't seem that different than when I saw him over Valentine's Day weekend, other than the fact that he was a little more jaundiced.  It was good to see him, but it was also really sad.  He wasn't himself; he was weak and in pain.  We visited a lot on Thursday and I brought him his favorite (at least lately) chicken noodle soup from Panera.  I had to talk to my dad about a few difficult things on Thursday, including his DNR and hospice care.  It was really hard, but it needed to be done.  I had planned to stay at the nursing home on Thursday night with my dad, but he gently kicked  me out so he could get rest.

On Friday, my dad's pastor came to talk to him about the DNR and hospice care and we made the decision to sign him up for hospice.  He was very tired most of the day on Friday, but he was a trooper.  My grandparents and one of my uncles were arriving that afternoon, so he was trying to stay awake and alert until they arrived.  Once dad was on hospice, they brought him the Rolls Royce of wheelchairs and a new, more comfortable (in theory) mattress.  They also requested more pain medicine for him, although I had to raise a little hell to get it for him because there was a bit of a disconnect somewhere in the process.

We went to dinner on Friday night and I went back to the nursing home to settle in for the night.  Dad tried to kick me out again, but I told him I'd like to stay if he'd let me.  I told him there was no where else I wanted to be and he said he would like me to stay.  Friday night was good on the one hand; my dad and I had some lovely bonding moments and I wouldn't trade those for the world, but it was also really hard on the other hand.  He was in so much pain and it was really hard to watch and be useless to help.  I did my best and I hope that I was able to help in some small way.  Once the pain meds finally came through, he was a bit more comfortable, but he also wasn't acting like himself.  He got a little ornery early Saturday morning with one of the nurses and I and I had to keep reminding myself that it wasn't my dad talking.

Dad liked to get up during the day, especially when he had visitors (his room wasn't conducive to large groups of people) and go to the dining room to visit.  Unfortunately on Saturday, though, he wasn't able to get out of bed.  He slept most of the day and we took turns sitting with him.  Later that afternoon, the hospice nurse gave me a booklet about death and the timeline for dying.  As I was reading the booklet, I noticed that my dad had a lot of the symptoms that fell in the "hours to minutes" time frame for death.  As such, I was really reluctant to leave for dinner, but since I had been at the nursing home all night, my family encouraged me to go get a bite to eat before settling down again at the nursing home for the night.  My mom stayed with dad and I went to eat with my grandparents, uncle, Shirley, and her friend, Chuck.

When I got back to the nursing home, my dad was still sleeping and mom offered to go back to the hotel and get my glasses (by this point, I had been wearing my contacts for almost 48 hours) and a change of clothes.  As soon as she left, I noticed that my dad's breathing was very labored and I started to get a bit hysterical.  One of the sweet nurses came in and said "honey, this is going to get really hard.  Are you sure you can handle this?" to which I replied "Whether I can handle it or not, I'm not going anywhere."  I did not want my dad to be alone.  I held his hand, put my head next to his on the pillow, and talked to him for a long time.  I said a prayer, told him how much he was loved and by whom and I told him I wouldn't be who I am today without him.  At that point, he squeezed my hand a little bit and I'm not sure if it was a little twitch or not, but I feel strongly that he heard me and squeezed my hand to let me know he did.

My mom got back a little while later and saw I was upset and asked if I needed her to stay.  I said yes and about 15 minutes later, with my mom and I by his side, my dad died.  I can't really express how hard this has been.  I would not have wanted to be anywhere else than by his side, but I had a really hard time reconciling the fact that one minute he was there squeezing my hand and the next, he was gone.  I keep telling myself that he isn't in pain anymore, which is a huge blessing because he was in so much pain, but I miss him so much.  I've wanted to call him at least a dozen times since I got home and I can't.

May 2013 at the Charlotte-Genesee Lighthouse in NY
I've run the gamut of emotions the past week; sadness, anger, guilt, regret, you name it.  I feel gypped that my dad won't get to see the boys grow up or see me finish my half marathon, but then I think back to others who've lost parents or loved ones at a much younger age and I try to feel grateful for the 31 years I had with him.  31 years is a lot, but I want more.  I'm angry because he was 55 and too young to die and I still need him.  I'm angry that we didn't catch the cancer sooner, that my dad didn't go to the doctor (someone gave me a photo of him from Christmas and you can tell he is sick in the photo.  I have a photo of him from when we saw him last May and the difference from May to December is shocking.  He did not look well) and take care of himself.  Then I think to myself, so what if we caught the cancer 9 months earlier?  The prognosis for liver cancer is not good, so would my dad have gone through months of arduous chemotherapy or radiation treatments for the same result?  It was hard enough watching him suffer the past 2 months and I can't imagine watching him suffer longer.

I feel guilty for not realizing that he was sick, but then I remember how private my dad was.  I regret that my dad and I were not as close as we used to be.  We used to talk every Sunday and see each other more often, but we both had our own lives and we knew that we loved each other even though we didn't talk as much or see each other as much.  I mentioned to my dad that I was sad we weren't as close as we used to be and I was sorry for that, but glad that we spoke every day since he was hospitalized in January and that we saw each other twice last month.  He said it was ok and it was part of life and being a grown up.  I am grateful for the past two months of getting to talk to my dad everyday and I'm thankful for the opportunity to have been with him during his final days and when he passed.  As hard as the past few days have been, I wouldn't trade them for the world.  He knew I loved him and I know he loved me.

May 2013 Four generations of the Boyd family
We stayed in Ohio until Monday evening and I made the decision to bring my dad to St. Louis to be buried at our national cemetery.  My dad was an Air Force Veteran and a very patriotic man.  His funeral was this morning, complete with military honors and I think it is what he would've wanted.  My grandparents are buried at the same cemetery and it feels right having him here in St. Louis with Matt, the boys, and I.  We are having a celebration of his life at the end of the month (on what would have been his 56th birthday, actually) in Ohio and that feels right, too.  Canton has been his home for nearly the past 10 years and having this celebration at his church with his second family is the right thing to do.

I'm trying to cope as best as can and also keeping in mind how Matt, the boys, and my mom are grieving, too.  I find myself fluctuating between a complete loss of appetite and bursts of incredible hunger.  I find myself in moments of complete grief, where I break down and cry until the feeling passes.  I also find moments of smiles and laughter thinking back on fond memories of my daddy.  I'm trying to take care of myself as best I can, but there is so much to do and think about and so I take things hour by hour.

May 2013 - best Bebaw ever
This whole experience has taught me some very important things:

  1. Life is too damn short.  Don't take those you love for granted, don't sweat the small stuff.  Laugh a lot, love fiercely, and enjoy life. 
  2. When you are in the darkest time in your life, light shines through in the form of those that care about you.  I have been blown away and humbled by the love and support that I have received from my family and friends.  I am blessed beyond measure and I appreciate each and every one of you who has given me a hug, told me you loved me, listened to me jabber on, and offered your support and help.  I think in his final days, this really sunk in for my dad, too.  He and I talked about this on Thursday and he said he didn't realize how much people cared about him until he was sick.  
  3. As much as it sucks to think about, death does happen so it is best to have everything in order.  It's best to plan ahead instead of trying to take care of things when you are in crisis mode, believe me.  Matt and I have already said that once the dust settles in the next few weeks, we are going to sit down and work on our wills, power of attorneys, and make a binder of all of our pertinent account information, etc.  It's unpleasant to think about, for sure, but I'd rather be prepared. 
July 2010 - Nick's birthday at the zoo with Bebaw
I appreciate you reading this long post; it was very cathartic to write.  I am going to try to get out and run this weekend.  The weather is supposed to be beautiful and I haven't run in over a week.  It will do my soul some good to run and clear my head.  

I know these two little boys have a special guardian angel watching over them
In loving memory of Robert Emmett Boyd
March 22, 1958 - March 1, 2014
I love you, Daddy, and miss you so much
Rest in Peace