There is so much I can't say, so many things I am going through in grief that go beyond all I have to communicate. I have never been here before. My body hurts, my limbs are filled with lead sand or something .. but I feel stiff and heavy. I have no apetite, but eat what i can as best I can.. and it all runs through me within an hour or two. Some times are better than others. Waves of saddness hit and I just let them. I dont' fight it, but I do find I don't do well here in the AM... when I used to sit, read the paper and drink coffee with Grandpa... or when we would go for walks on the wash together... mornigns are the hardest time of all. I still can hardly breathe then. But I do, and i walk, and I drink coffee and lots and lots of water to flush the biochemistry of grief so I don't sink in this ocean. I'm trying to remember just what happened.
January 14th (E-mail from Lisa mom):
In case you haven't talked to Toni in the last day or so, I thought I'd update you on Ron's medical care.
His first round of chemo ended this week and he had an MRI for his brain that showed there is NO brain cancer. They also met with Dr. Vafai to talk about how to proceed and Dr. Vafai feels that the chemo is too hard on Ron, so he is not going to proceed to a second round as originally planned. The chemo appears to have stopped progression of cancer but his body is just not able to hold up under it; he is extremely weak.
Instead, he is putting Ron on a week or two of prednisone, which he hopes will make Ron feel a bit better and may help his appetite, then he is going to start him on Tarceva. Tarceva targets epidermal growth factor receptors and when it works it slows or stops the growth of tumor cells. It is generally not used in conjunction with chemo. When it works, it often shows signs of symptom relief within a couple of weeks. It does come with its own assortment of side effects.
Keep your fingers crossed for him, he could really use some relief.
Love, Lisa
January 15th(e-mail from grandma):
Children,
It is 2:00 AM.
I just got home maybe 15 minutes ago. Daddy and I have been at the hospital since 7:30. They kept him there.
After a day of rest and seemingly doing well, I took his glucose reading just before I was going to give him dinner.
It was 525. I called the doctor and continued making his dinner. Very tender steak and steamed vegetables. He ate all of it and he ate well all day long in fact.
When Dr. Vafai returned my call I gave him all of the readings for the entire day. Our focus was the blood sugar. His before dinner blood pressure was low 89/55. Doctor said, " to Emergency immediately". He was calling to let them know we were coming. They were waiting for us when we arrived.
Daddy was in no distress, still sort of breathless, puffing out of the mouth instead of breathing through the nose. He actually was more alert and with it than he has been for a number of days.
I had given him a Glipizide blood sugar tablet after that 525 reading so when it was taken by the admitting nurse, it was down to 458, still too very high. So after many blood draws, more hydration, chest x-ray, conversations with the doctor there and Vafai, it was decided that he should stay to find out why the low blood pressure as well as to stabilize the blood sugar.
He was given insulin for the very first time and that brought it down to 300. Cannot remember what time that was. Punchy by then anyway, both of us.
When I left him his blood pressure was normal 110/69 and his pulse was 101 . I left before the blood sugar reading was taken.
His nurse Ash, was attempting to teach him to breathe through the nose and to stop puffing out his air through the mouth. I am hoping that he'll listen to her. I have been trying for days and days. Same technique that she was telling him to do. He is so funny. Gave me a look. I just shook my head. Nothing to say, too tired. He was trying.
So, it is looking like Prednisone is not the way to go for Daddy. Guess we'll find out more tomorrow.
Just wanted to let you know.
Love,
toni
We spoke a long while with Grandma in the evening. grandpa was calling her a lot from the hospital. He wanted her to bring him his glasses when she came back. He wanted her to tell his children "Tell your children; no. Tell OUR children that I am hanging in as tough as I can." It made us smile and breathe deep that he would be home soon.
January 16th:
I don't know what happened. Earlier in the day I was joking with friends about Grandpa being a difficult patient, feisty and wanting to get home. Then I got a call form my dad at about 3 in the afternoon. He said "I'm going to have to beg out of babysitting for you on [Hubby]'s birthday. Dad is crashing and he ain't gonna make make it. We're heading down." Grandma was beeping on the other line, sounding awful. I told her she didn't need to tell me.. we were going to be on the road and coming ASAP. I called Hubby at work and said "We gotta go, Love... Grandpa is dying." He said, "I'm coming home right now." Dear Friend came quick and got the cats boarded for me, bless her. She gave me hugs and wished me a safe trip. Sue came over and watched the kids while Hubby and I packed and sorted and packed some more. We were on the road by 6pm. We got here at 2Am to my parents already here. They had flown down and had been to the hospital. Grandpa had been transferred out of ICU because "his condition is very very grave.". We were to speak to hospice the next day to take our next steps.
Dear Friend sent this e-mail on my behalf:
Dear friends,
I am writing to let you know that today Jessica, Paul and the babes travelled down to Palm Desert to see her Grandpa Ron. He has been in the hospital, and is not doing well. Unfortunately, he is not expected to pull through, so they are hoping to make it in time. They plan to be gone for at least the next three days.
Please join me in sending any positive thoughts and prayers you can spare to Jess and her family.
Kind regards,
Tonya
January 17th:
We got going in the AM and went to the hospital. Nothing could have prepared me for what I would see. There was Grandpa propped up in the bed, a mere 129 pounds maybe. Bald from Chemo, sallow, shrunken. He was "sleeping", but his eyes weren't closed all the way so sleep had gathered in the corners and his face was slack. Big Boy said "I'm nervous" and Hubby took the kids out so I could be with Grandpa alone. Grandpa had a BIPAP mask on over his nose and mouth... with velcro straps around his head to hold it on. It was a pressurized oxygen, so the machine puffed and sucked and his mouth, hanging open, would puff and his throat would puff and his tiny chest would rise. I foudn his hand under the blankets and held his hand and held his hand. They were unchanged. The one thing about him stuck in my head so sad to lose was the one thing unchanged by this evil cancer. They were cold and stiff. His body was cold and stiff. I can't write much mroe about what I said with him or told him about or the tears shed. But I was with him on my own for about an hour while Grandma and my parents met with the hospice nurse.
Relatives form the high desert drove down. My aunt and great uncle.
My Mom (biomom) flew in later that day and met up with us at the hospital and visited with him and he woke up with a start, seemed to try to sit up, squeezed her hand. It was amazing to see this. In my heart I know he was waiting for her... his "first daughter". She and I stayed there for a bit while Grandma and Mom (Lisa mom) and Dad went and did due diligence to look at RCFs int he area.. though we knew grandma would chose to take him home.
We all got home at the end of the day and ate in our own time.. heck, I don't even remember...Grandma and Dad went back to the hospital again. My heart ached to, but I knew I needed to care for my babes and Grandpa would have kicked my ass for not doing that.
When they got home, Big Boy and Baby gilr were sitting at the Gohonzon, and so we had a service, and my GOD was it ever a service. Bio-mom, Lisa mom, Me, kids, Toni... all chanting, rigning bells. Praying for a peaceful passing. Nam Myoho Renge Kyo
Late that night mom and dad and hubby and I sat at the table and talked in the dark, baby girl sleeping nearby. Hubby and I got caught up on the business of the day. We talked about what home hospice would mean. Dad divulged that the nurse had trouble getting a temperature reading on Grandpa that night. We all prayed for a peaceful ending.
January 18th:
2AM the phone rang. Hubby stirred with a start, and I soothed him down... "It's the hospital calling honey, I know it." Then I heard Grandma wail. I jumped off the futon and met Dad halfway down the hall "It's the hospital. They've called it, he's gone." I hurried to Grandma and my mom (bio mom) was holding her and she was wailing for her Ronald. "We got to go... we got to go." But her legs gave out. She couldn't move her legs. I called my sister to tell her, she sobbed immediately. I told her I didn't want to wait to tell her, and she thanked me. We said we loved each other. We all pulled on clothes and crammed in the car...me, mom, dad, bio-mom and grandma....We half carried Grandma.. her body just gave out. She wailed for "daddy, Ronald... husband... my love..." We just held her as best we could.
"This seems like a different world" my Lisa mom said
"It is definitely a different world.: bio mom and I responded. Empty roads, silent world. dark.
We got to his room, and all was quiet. No beeping machines, no masking pressuring air into his body, no morphine, no iv.... just a quiet tiny body in a bed. The ladies kissed him on the head and cried a bit, quietly. My dad sat at the foot of the bed silent and staring. The nurse came in to get information for "his arrangements".
There is a lot I am leaving out here.... talk of things I feel he told me in that time. I truly believe he stayed in there a tiny bit until we got there. But then there were signs of him all around us outside and on the way there and home. I can't share what I told him with my last kisses and tears.
It was the longest day of my life. Longer than the day I tried to get Big Boy of of me and ended in a cesarian. Time was just all kinds off of kilter. Fuck that noise.. it still is, but not as bad as that day. I went with mom to get my sister at the airport, took her to the mortuary to view him. I got to see him again, looking even better under soft light, a blue blanket and cushioning to hide how tiny he was. Talked to him again. Lots of talking to Dear friends hubby to get info for Hubby's birthday gift. I got some calls, I made some calls.
We celbrated Hubby's birthday because we truly truly needed to. We all pitched in a got him an iPod and we all beamed as he glowed in gratitude.
We all feel so grateful. Grateful he passed in peace, in the night. grateful he saved us from home hospice care and all it would entail. grateful for how he spoiled us all rotten as dirt every day of his life. grateful for the flowers sent. grateful for who he was and how he was. All the same, just sad sad sad.
The next few days are a blur. I do my best to be with my babes and do fun things. grandpa is everywhere. I cried a lot at the Living Desert train exhibit, as it was his favorite thing. Cried when i ordered for lunch because we used to share that. One night I cried myself to sleep, cried myself awake and cried all morning long until about noon. He is with us all the time, and beginning to fade a bit as he sees were are making it ok.
Mom and Dad drove Grandpa's car back home north to sell it. It was hard to see it driving away and me "making sure it left"... Grnapd would always stand in the drive to make sure we didn't try and come back. I'm finding myself doing that now as sister leaves, moms and dad leave.
Now it's me, hubby, the babes and grandma. I slept with her until she was well asleep last night. making sure she drinks her water. There are so many things we are doing for this house, neglected from the sickness... for grandma in hopes she will be alright. We are going to sty until tuesday... We'll go home once Grandpa is safely in his niche at the memorial park.
I think I'll leave him a bottle of tanqueray. I just hope it fits in that little flower vase.
So much I'm leaving out, but need to. I am so proud that I was able to get this out.
Grandpa's last words were:
YOU ARE MY WIFE, AND I LOVE YOU.