Tuesday, December 28, 2010

Disembarking

This is what has happened so far, and these are just facts:

Going on a cruise may not have been the best idea. You need to understand Mom though. Christmas is Big. It's HUGE. she usually spent a solid month of preparation, stringing garland, making centerpieces, arranging travel. All of this focus so that the family had a "magical" Christmas. It couldn't just be good, it had to be magical.

So she told us she wanted to go on a cruise. With no energy, i've come to believe it is because she thought the cruise would provide the magic. We all acquiesced, not that a cruise was what we wanted, We just wanted to be selfishly get Mom all to ourselves locked on a boat.

When I saw her at Thanksgiving it was difficult. She looked like a wounded bird, shivering in the cold. This woman once so full of life, was now so weak. But she was still Mom. We made plans, we looked at houses. We ate thanksgiving dinner. I made like seven dishes and she tried each of them (I later found out she couldn't keep any of it down) but she told me all tasted so good. Even though she had lost most of the taste in her mouth.

So I knew that the chemo and the cancer was aging her. I wasn't prepared to see her. She had aged two decades in under a month. Her last chemo had letter her with sores over her hands and feet and her poor mouth was full of sores. while her arms and legs were wasting away, her body had begun to fill with fluid, and this petite woman who once went on a diet of hamburgers and shakes to put on a few, now had a large distended belly. and her feet were too swollen to walk. But she was still Mom, under that sore little body, it was Mom. We had breakfast together and the whole family sat around the buffet and made dumb jokes (a Dayton specialty), and Mom would roll her eyes (a Susan Dayton specialty).

We got on the boat, and things were going well. We had a few good meals, we sat around and talked. We watched some movies, and made plans. We are always making plans. She had a nice view from her balcony, the Queen of the Sea could finally survey her domain. We thought we had two weeks together. Things looked good. We could sit and hold hands and say the last things that we needed to say.

Things changed on the second night. It was a hard night that only my Dad knows all the details to. But we thought it was just a bad night. Her stomach and intestines were revolting. Nothing was staying inside. So the next morning, we sent Brandon and Annie's families off at the port. Mom was just going to rest up. Just to be on the safe side, Dad decided that we could rehydrate Mom and get her started on an IV and get some fluids into her. The medical center on the ship was fairly well equipped. NOt only did they come to her room but they offered to run a few simple blood tests. The IV was slow going, but before we got more than a few hundred cc's into her we got the blood tests back. Her white count was precipitously low. Normally your white blood cell count tells you how sturdy your immune system is. A week ago hers was 8,000. Today it was under 500. Her new Chemo regimen had a dangerous side-effect. The ship told us we had to get off. Unfortunately, the ship was leaving in an hour. WE had to be off by 6:30. Half the family was on shore and we had no way to contact them. Cameron, Dad and I repacked 15 days worth of living and scrambled down to the tenders. The little shuttles that take you to port. With the help of a lot of crew we got her baggage down the gang plank and lifted her little chair down to the boat.

There is a decent hospital in Cabo San Lucas. Ameri Med caters to Americans but the small facility was clean and fairly modern. However Mom wasn't getting any better. She was vomiting anything still left her system, and the diarrhea wasn't helping. We hoped that getting her fluids and medicine could stabilize her and that we could get her back to Buffalo. Specifically closer to her oncologist, and a vital medicine that could help her white count rebound. It was now Christmas Eve and we were in a foreign country miles from those resources.

Dad hadn't slept in two nights. After midnight I insisted he get some sleep. We would have some important decisions to make in the next few days, more critical ones in the next morning. I stayed with Mom. Cameron smuggled a blanket and pillow from the Motel and I settled in. I have had a lot of sleepless Christmas Eve's in my life. tossing and turning, craning my ear to hear Santa. Ironically I spent the same Christmas Eve craining to hear the same figure. Listening for groans and whimpers. The sores in Mom's mouth kept her from swallowing, it had been two days since she had kept any nutrition down, in fact she couldn't even swallow water. So I stayed up with a wad of gauze dipping it in water and letting her suck on it for relief.

When we got on the ship we were talking about our 3 month plan. Dad was going to take medical leave, and move to Salt Lake. By the time morning come, we were talking about a one month plan. LIttle did we know that soon we would be speaking about days and hours instead of months and weeks. The writer Wallace Stegner described the west as a place where the optimism was greater than our water supply. Our problem was that our optimism was greater than our time supply.

Mom was still talking at this point. In the morning she said she just wanted to go home. She wanted to go to Buffalo. We thought we could get her to rebound, to improve. We thought we could rehydrate her and find medicine that would help her white blood count. Buy what our hearts told us is that she was miserable here, she wasn't improving, and she might never improve. WE looked at flights and what we saw was disheartening. 15 hours, two or three layover, and on Christmas day. Mom hadn't done well just sitting and I didn't think she had it in her. Dad took control in the hospital and checked her out against Medical advice. about 5 hours later we were on a plane to Salt Lake.

Uncle Lynn arranged for a Docotr to meet us at the Huntsman Cancer Institute. It turns out that the Chief of Oncology there was a good friend that went through medical school with Dad. We talk a lot about what goes into Medical research. I have been profoundly grateful for the money that has been donated for end of life care. However we didn't look at it that way. We were just looking for a place to rebound and recover.The Huntsman Cancer Hospital is one of the finest Hospitals I have ever been too, and we've had incredible care.

Non of Mom's major organs have failed, her liver is 60% cancer, but her lungs are working and kidneys are working, But fluid is filling her body. Death is a curious thing. I wish there was one thing we could point to and say "fix that" or a clock that gave us predictable time. But we are watching a shrinking clock where Months rapidly shrink to Days, and days become hours. But all day we wait.

Once the brothers were here we hoped for change. Instead on our first meeting we sat and talked about DNR orders, on the time that was rapidly disappearing. And mostly we wept. We originally wanted to take a day or to recover to allow visitors. Instead we realized now was time. If people wanted to say goodbye this was their chance.

So I wrote this in inches, in-between the flood of family, and visitors. And I came home to rest, and tonight we wait. Mom is barely here now. and we wait. We wait for little things, dripping away life. Statistics dipping and swelling.

They say that Cancer is the loving disease, because we get to say goodbye. But it is hard to say goodbye every day. Maybe I can get one more day, and say one more goodbye.

26 comments:

Emilie and Branden said...

My heart is breaking for you. XOXOXO

gojennywestgo said...

Thanks Damian for keeping us informed. Your Mom is dear to me.

Nick Stewart said...

Damian,
I am so sorry for you and your family. Thankfully we have the belief and knowledge of the plan of salvation. Know Crystal and I have you in our thoughts and prayers.

elsabags said...

You're a beautiful (handsome..)writer Damian. Again my prayers are with you & your family. Let me know if you need anything.

lisa said...

We love you Damian. We're praying for you and your family. I'm so glad your mom is surrounded by so many people who love her during all of this.

Sara said...

When my dad died, people would say, "I'm sorry," and I would instinctively say, "It's ok." And this always made me so uncomfortable because it was like I was trying to console those who were trying to console me. So, I swore I'd figure out something better to say to people who are grieving, but I have yet to figure it out. So, for lack of a better phrase, Damian, I'm so sorry!

Carole Cannon said...

Damian, I'm so sorry to hear about your mom. I feel like I've gotten to know her just a little through your posts and pictures the last few months and it has truly been a privilege. What an incredible lady. Lots of prayers being sent your way.

Iffer Mitchell said...

Damian, you have shown such courage in this difficult time. I am praying for your family.

Barbaloot said...

I'm so sorry the trip was cut short! But I keep thinking how nice it is that everyone already had this time off----so you at least get to all be together, even if it wasn't on a boat as hoped for.

We're thinking about your family and praying for you.

april said...

So much love to you and your family. You are in my thoughts constantly.

Brigitte Eppley Pace said...

Damian - I just keep thinking about how much fun I had with your family at Lake Powell years ago. I'm so thankful that I was able to meet your mom - the amazing woman that raised you and Adrian to be the great men that you are. Your family is in my prayers!

Shawn said...

I lack words. You and your family are in my heart and prayers.

Tim Baran said...

What a heartfelt account, Damian. That last sentence resonated. As a teenager I wasn't granted the opportunity to say goodbye to my mom, but never thought about how difficult it would be to have to say goodbye every day. My thoughts and prayers are with you, Adrian and all the family.

jared & amber said...

Damian,

Such a sweet post. Thank you for sharing, I think about you and your family often. My thoughts are with you and your family!

Gini Dietrich said...

Damian, although we've never met in person, between you and Adrian, I feel as though I know your family really well. This breaks my heart for you and I know I speak for all of your friends and family when I say we're grateful you took the time to write this. I have a very close friend who has cancer and his wife, crying, said to me the other day, "I don't know if it's the cancer or the chemo that kills people." I think it's the chemo. My thoughts and prayers are with all of you. xoxo

Linda de Azevedo said...

Damian, how you can write so descriptively and lucidly and from your breaking heart is beyond understanding. Thank you for sharing the intimacy of your family's experience in such a moving way. Please give Merril and dear Susan my love and sympathy. I love you and your brothers and the part your whole family has played in my family's lives. God be with you as you watch and wait.

Creekgal said...

Dear Damian,

Your mom is amazing, and she has clearly left her mark and legacy in her children. I pray for you, salute the family's courage in facing this end time as Susan has always faced things -- with strength, organization, grace, and above all, faith.
Love to all of you,
Sue Tannehill
Network of Religious Communities

DianD said...

Damian, When you were waiting for your plane at our house on that crazy Sun. and you said you were hoping for a few more months with your Mom, I so so hoped you would have that time. When next I heard that your mom was in a hospital in Cabo my fervant prayers were that she would get back to the states. Then, selfishly, I next hoped that Dixie and Livy would make it to say good bye and that she would know how much they cared and that they were there. I'm so grateful that those prayers were answered. As hard as it is to watch her suffer day in and day out, I'm thankful that she's tarried long enough for so many people to have the chance to tell her what she has meant to them. Truly, all who were fortunate enough to know Susan Dayton -- for a long time or short, were blessed for having rubbed shoulders with her -- their lives enriched. God be with each of you. You are in our prayers. Please give our love and condolences to your Dad and family as well.
Dian Shumway

Paula said...

Just got the message on my e-mail and am totally in shock and so worried about our dear friend Merril. We have loved them both for as long as we have known them and Merril for life. We have spent time in their home and think we are part of the family as they treated us like we were brother and sister and were so good to our grand children. I can't even explain how sad we are even though we know she will be out of her misery. She is an amazing lady with unbelievable energy and talent. Cannot believe my friend will be gone until I can see her again and thankful we know that. I love her dearly and love Merril just as much. Wayne was raised with the Dayton family and feels the same about him. What a loss to all whom she has touched. As I watch the blizzard going on right now here in Wy., I realize I cannot just drive to SLC right now as I really want to. I will hopefully be able to call Merril tomorrow and talk to him. Our prayers are with you all. She is a beautiful person.

Mark and Gainell said...

Damian,
I worked with your Mom in PTA. She is a woman with style. I so admired the enthusiasm and direction she had as she led Utah PTA.
It is with great sadness that I have learned of her battle with cancer these last couple of years. Thank you for sharing the "facts" and emotions of the last few days.

Sharon said...

Our prayers are with your family at this time. We feel so grateful to know you and we care for your family a lot.

Rachel said...

Damian--I am Natalie and Adrian's friend from Buffalo. Susan is so beautiful in every way. We are so sorry for your loss. I pray that "the peace of God, which passeth all understanding, shall keep your hearts and minds through Christ Jesus." Your family is in our prayers!

Corinne Teichert Baird said...

Damian - your mom is one of my heroes. I can just imagine your dumb jokes and your mom's rolling eyes at Thanksgiving. At least you weren't throwing bowling pins. My goodness I love your family. Why my dad and your mom needed to go early I guess someday we'll know, but for now (and the rest of this life) I think it's ok to cry amidst the faith. Love you.

Meike said...

I am a stranger to you and therefore i am not sure if i have any right on commenting on this very personal account of your feelings. I am sitting on the other side of the world (Germany right now) and I am sharing your emotions.. it is my aunt that has been fighting with cancer the last 2 years and in October was told that the doctors are at the end of chemos for her and that there is no more treatment. She is a faithful woman (not a member of the church) and has lived a life of giving and believing. She had set herself the goal to be with her family for christmas. She reached that goal and then asked to go to the hospital on monday morning for the final journey. She even got all her energy together and walked down the stairs to the ambulance. Right now she is in a hospital bed living her last painful hours in her earthly body and we are praying and fasting that she can go now. I went to see her two days ago to say goodbye and I have to admit that some part of me thought: i don't want to see her in pain, i want to remember her like the last time i saw her. But when i went into her room there was an unbelievable peace. I know we as members of the church always talk about how you can feel "the other side", but i really felt that her spirit was already drifting between worlds, especially in the very painful moments and that she is at peace with her life. It overwhelmed me with an immense feeling of love and when i stroked her dry cheek i whispered into her ear to let my children on the other side know that i am doing my best to stay faithful and not give up on finding a good man. I really felt that it is holy ground in her room. It is still painful to see someone you love suffer and to have the roles reversed (children taking care of their mother). My prayers are truly with you and with your family.

West Family said...

Damian,
You don't know me or my family but we are in the Amherst ward in Buffalo with your parents. We are so sorry for your loss. Susan was a wonderful lady, I have enjoyed getting to know her and your father. Both of them have helped John and I transition into a surgical residency with me raising 3 almost 4 children mostly on my own, which I know your mother did, I admire her so much! Death is a curious thing, as I said goodbye to my father in a similar way, having to decide as a family to let him go in peace because he had suffered so long...I've experienced those small moments of lucidity that you will cherish always. She will be there watching all of you from the other side, I know it. Our prayers are with you. John and Jan West.

Slyck and Slim said...

I am crying for you and for your family because I know how it feels to watch someone you love have to go through "the loving disease." As I look back ten years ago to Dad's passing, as painful as it is to go back there, I am grateful for the Lord's tender mercies that laced the painful experience of it all. I am grateful for the absolute trust I gained in the Lord as the pain of the experience forced me to bend and submit my will to His. Sometimes, He takes those who are most loved and have the most impact on others to mold those left behind into what He needs them to be. Such is proving to be the case in our family. He is aware of the family your Mom leaves behind, Damian. I love your Mom and count myself lucky to have been a part of the "Dayton Specialties" on occasion and witness your Mom's classic responses. She was heroic in my eyes and will forever remain so. Much love to your family. Kim Teichert Parker