The last three weeks
September 29, 2012
Dear friends and family,
For you who do not know yet, Tim was diagnosed with pancreatic cancer stage 4 on Tuesday. The doctors say it's not operable, as it has spread also to the liver. He is shocked and everyone else as well. Tim feels very week especially after the biopsy yesterday (his brother a medical doctor was with him for a few days). He is taking pain medicine as he has excruciating abdominal pain since last week-end (which caused him to go to have it checked out).
Besides that he is very realistic and is dealing with the 'new situation' in an amazing way. I will support whatever way he will choose. Miracles are possible and prayers, good thoughts and also occasional e-mails to him are appreciated.
I am returning tomorrow from NY from Germany. As you will understand I might not be able to keep in touch with each of you individually. Occasionally I will send out an update.
Lots of love
Monika
On Oct 1, 2012
dear all,
yesterday i arrived at the apartment in ny. tim is so pale and weak, he speaks very slowly. we went for a walk around the block with a break to have a green juice. he is wobbly when walking, walks slowly and drags his feet. he wanted to discuss options with me tonight but now he is so tired and sleeping. his brother thinks chemo could be tried and might help with pain management. every two weeks for a not set amount of time can be stopped any time he says. that is what the doctors at lennox hospital recommended.
tim's brother just sent me his write ups from the 'diagnosis and treatment suggestions' - after tim had the cat scan and biopsy. as they put it: 12 month survival chance versus 6 months without....numbers, numbers, numbers... the way he moves and looks i am not sure if he could take even one round
i am overwhelmed and do not know what to say. he has to make this decision but he has no energy to look into it. he went with his former wife for 4 years through different rounds of chemo and knows from her how strongly it affected her - yet it is tempting. he also knew my brother's partner who died 3 years ago after the first round of a 'super new' chemo for leukemia - she was supposed to receive 4 rounds. he is under pain medication - oxycodone 5mg - the doctor said the pain will increase and they start to manage it now. i know that no one can really help directly with this. your prayers will facilitate a clarity in him and more strength in me.
thank you all for your support and prayers
lots of love
monika
October 7, 2012
Dear family and friends,
Yesterday was my first time ever at an emergency room in a hospital. Tim was so weak, dehydrated - despite him drinking as much as possible- shaky, not able to walk without holding on to me or something, sometimes disoriented, not able to shower and shave alone easily, that i felt there was no choice. (I felt he just needed an IV ....) the visiting nurse told us a day before that they almost never do that at home.) Two friends came bye at 12:30 and they agreed seeing the condition he was in and we brought him together in a taxi to Lennox Hill were he went the first time 2 weeks ago. It was most comforting to be accompanied by 2 friends.
His Primary Care doctor - after I called her - came as well and stayed all the way though till 1:30am. She was overwhelmed and called about every specialist doctor she knows to see Tim. That emergency room was a nightmare we were there from 12:30pm -10pm!!! I had to keep finding s. o. constantly to give him pain medicine, to get a container to pee in …. They did not give him anything to drink till midnight! Only IV liquid. Then the only thing he could get were 'ice chips', round frozen rolls you can put in the mouth. Tim sucked them up saying it is bad quality water and just not like water.
MRI at 10:30pm - Tim's brother felt it was not necessary but Tim wanted it. I understand he wants to see if anything changed. It is also his way to deal with this 'new situation'. Thank God a friend came at 10pm to keep us company till 2:30am. At 3am finally home.
Tim was so patient even made people laugh a few times. And he does speak his mind and ask questions. Very slowly but firmly. We had to sign a bunch of papers which I did all read, still not sure how the system here in the US works. I can speak tomorrow with a social worker who will help me figure out the financials. As I have heard so often from people going bankrupt from medical bills.
They asked Tim 10 times the same questions, drew blood 4 times. Asked for his urine 3 times. We found out that they have no central computer system and every new doctor and nurse performs the same task. I noticed that it is good for Tim to be able to repeat what happened to him to each individual over and over. It's a way to keep telling himself as he is still in shock. I can't even imagine how shocked he is. A few times I just wanted to scream. Yet, I did very well, stayed focused and centered to support Tim. I interrupted, asked, added sentences to the forms, …. I know now why it is essential to not go alone to an emergency room.
They kept him overnight in a room one step down from Intensive Care. Wires, wires, one being morphine through a pump he can push when needed, which it might help with his pain. I am so new to all of that. Called his brother many times and ask him to speak to the doctors. It's good for 'them' to know a doctor in the family monitors things. Tim's sister is coming Monday, which will help as well.
Thank you all close and far for your beautiful support. All of your physical help, good thoughts, and prayers are a lifesaver for us.
Lots of love,
Monika
October 10, 2012
Dear family and friends,
the doctors think Tim has 2 more weeks to live. As you all know I usually would reject this. Yet I see Tim physically declining so rapidly. At the same time all gates are open and I do believe anything is possible anytime. He is still at Lennox Hill Hospital.
I have to revise a lot of my judgments about doctors and hospitals. Tim is in - one step down from intensive care. Yes, it is a crazy place. The nurses work to their exhaustion. Always lot of doctors of different degrees around diagnosing, prescribing, asking questions. Tim does like the attention and when I complained about the mistake a pain management doctor made, he got upset with me saying: be quiet they are all helping me here. He listens to their advice he asks questions and talked about the diagnosis. I am very touched by the compassion from the doctors and everyone else around giving their very best. My heart opens with theirs and my judgments and prejudices are gone.
Tim is focused on moment to moment. Eating a bit - and his 2 sisters and one brother in law get anything he wants. He really enjoys having family here from California and expresses how grateful he is that they are here. Another sister is coming Thursday and then his brother Sunday. Going to the toilet is a big ordeal and very exhausting for him. I usually stay with him and take care of it except I need help with walking the 8meters.
A few friends from his company come. He likes that. He speaks very slowly is witty with some people and feels comfort when I massage anything on his body. They pumped 2l liquid from his belly yesterday what gave him some release. The doctors suggest Hospice Hospital. What we all think would be the best for him and us. May be today may be next day. Once in the hospice I might ask a few local friends/-visiting friends for help. I would like for son to be there with him 24h a day. With me being there most of the time, his sisters help take care of background work so I am free to be focusing on Tim and are cheering him up. I could not without them. Your mails, clips, thoughts, prayers, calls, texts are all very appreciated they feed us on all levels. Tim likes to hear from me who called, wrote, prayed - he does not want to read or listen to a message right now.
I also let go of any ideas, concepts, about what Tim should do. He is present with everything and everyone. He sleeps, his pain medication works, he talks very, very slowly and expresses his needs clearly.
And: we are getting married in the next few days.
When his sister told him that she arranged everything he had a big smile on his face and said: you are my woman and I said: you are my man. I'll let you know when we move out of Lennox Hill Hospital and where to.
We are both so grateful for all of you in our lives.
Love,
Tim and Monika
Evening of 10/11/12
Dear friends and family,
On October 11th around noon, Tim and I officially got married. Such a beautiful and deeply touching event
Tim already prepared the evening before, telling the nurse on night shift he didn't want too many pain killers in order to be 'present'.
Although we had just moved from the hospital to the hospice on Wednesday at 8pm, he told Megan that he was looking forward to it (she is the youngest of his three sisters, all here with their spouses and she spent the night with him in his room - I came back from our flat at 8am, cleaned up the room and brought back candles, music, a gong and 3 beautiful cards, which we had written to each other this year.
At the same time a whole shipment of flowering potted plants arrived- probably 25 - all from one friend.
I then had to go to city hall here in Manhattan, pick up a civil servant, bring her to the hospice- we share the same birthday- Tim had to sign and barely managed - then bring her back, wait for the certificate, take it across the street to the Supreme Court, then go to a lawyer's. He wrote up and signed a document, allowing us to skip the usual 24hour delay between obtaining said document and actually getting married.
Back to the hospice, were all were already assembled. Tim's family, a close friend of mine, who officially married us and about 8 friends who were able to make it on short notice.
More flowers and plants arrived. The ceremony was marked by Annie's amazing speech - the friend who married us: tailored just for us. I have known Annie since 2000, our first year in New York. She warmly welcomed all family members, present and absent and also the deceased;
I strongly felt the presence of my parents and Tim's father was also there. When I get around to it, I will translate and send everyone Annie's speech.
Then the real surprise took place. On his own, in his now tender, fragile, slow and soft voice Tim said he had something to say - you have to understand that for the past 2 weeks he has hardly spoken at all, and in the last few days he has mostly slept.
Such beautiful words from the heart about us, about life, about the breath, the letting go but also, that he hopes we can overcome the present difficulties.
We were moved to tears. Such joy and sorrow shared together.
He then fell asleep 15 minutes later and sleeps constantly with little bouts awake, even now at 2:39am. So he woke up around 12:30am. I wiped the sweat from his face, arms and torso and gave him water and warm tea- which is now only possible with a straw.
He looked at me and said he is so relieved that we are now married. I play Irish harp music and he says: 'It sure is great to have you as my wife' and then his eyes closed again.
The nurse on night shift who came at 1am to check his temperature and give him his pain medication, told me in the hallway, that he would probably not live more than 1-3 days. She explained the visible symptoms, due to his liver hardly functioning anymore. I am so touched and am watching over him, since he sometimes wakes up and is disoriented. For example he asked what his options were if he does not do chemotherapy. I calm him down and remind him of his words, that we should be thankful for every breath and that he should quietly keep sleeping.
A surreal process, full of wonderful moments.
I have not had time to reflect or to grieve being a widow. There will be plenty of time for that later.
Right now it is all about Tim. To make his last days as pleasant as possible, to take away his fear and to tell him what a wonderful human being he is.
As usual, all the gates are open, those to life and those to death. Everything is happening incredibly fast. Here in the hospice, they said they never had anyone come only 2 weeks after the diagnosis.
Yes, Tim is simply a very special human being. It is now 3:15. Writing helps me process. And I want all of you to share so that you don't wonder what is happening here.
Tim and I feel all your congratulations, your prayers, your worries, your pain, and your joy.
With love
Monika
10/11/12
Tim’s words at the wedding ceremony:
Annie, the minister: "...and Tim, we know your heart is with Monika now…"
Annie: "Do you want to say something?"
Monika: "You are my man."
Tim: " I’ll say something: It means a lot to have the people in this room and so much has been experienced.
I appreciate it and I really say thank you to all you who have made this such a positive feeling and when I met Monika, I knew she was my soul mate and my guide.
We’ve been through -(Tim is making wave like movements with his hand).....like this… but it’s been such a joyous journey and I hope that we get through these present struggles to be able to emerge and rise above these present challenges and see what happens…
Through life there’s a certain detachment that I once remembered and realized that (I wanted to remember this) that no matter what happens that I can say thank you for each moment that I lived and to be able to say. I was given this life, I’m a guest here, and I didn’t deserve anything.' I just became someone who was, someone who could be able to be Monika’s lover and as Edward said to me yesterday, there’s something special in you, you can’t predict it, but you can just appreciate. And that’s the greatest gift I think I ever learned…to be able to appreciate the gift of this life.
And so, I can’t ask for anything, I can’t demand anything, but I can appreciate what’s given to me.
All: “Beautiful Tim…”
Tim: "Monika has a lot more to say… You have to… but she carries it deep inside and it’s amazing to me."
Annie: “You are both our teachers. The ring that Monika wears is a symbol of the love that you share, now and always. It’s a symbol of the continuity between the two of you.”
Tim: "Thank you, and by the way… I don’t like wedding rings." [Laughter]
“Well, it is what it is. No, no, no, I like ones like Monika’s, we bought her a ring in Mumbai once, oh that one, yeah on our first trip to India together. Yeah, and so that was our wedding ring and it is very, very special. And then that became part of it and it evolved into {?} and so I loved that Monika carries that ring with both of our hearts.
Annie: “I can’t help but think that this is just a renewal of vows, those vows were made a long-long time ago and renewed regularly."
Monika: "May be even before we met."[Laughter]
Annie: "So now I ask you the important question. Monika, do you take Tim to be your lawful wedded Husband
Monika: "Yes, I do."
Annie: Tim do you take Monika to be your lawful wedded Wife
Tim: " Yes I do."
Annie: "Monika, Tim you have been married in a spiritual ceremony in a tradition that emphasizes this moment, each moment the reality that is always here to be appreciated.
You are now Husband and Wife.
Please take care and treat each other as you have as teacher and friend. Your marriage has given confidence to others, help each other. Love is the fruit of compassion.
By the power vested in me by the state of New York. I now pronounce you Husband and Wife."
On Oct 17, 2012
Dear family and friends,
last night at 9:45 Timothy exhaled the last time.
After struggling all afternoon he slowed down around 9:30pm. He became so peaceful. Our hearts opened wide. And then, the four of us sent Timothy off with lots of love, appreciation and good wishes.
Tomorrow I will send out a more extended e-mail with links to a sharing website/page, honoring Timothy and a link to the Timothy O'Brien Fund that I created to provide scholarships for emerging artists in our favorite theatre in western Massachusetts.
Life became even more of a mystery the last 3 weeks. One breath at a time.
Love,
Monika
October 19, 2012
dear family and friends
last night i had a very restless sleep knowing that today would be the day. i left our apartment very early - on this rainy day - to take the harlem train to woodland cemetery. all the people i have met dealing with the dead body of tim have been exceptional the gentleman who drove me in a service car from the entrance of the cemetery to the chapel at least a mile - was so compassionate, told me a few stories of mysterious happenings in the chapel and refused the tip i wanted to give him.
they asked me to sit in the chapel. I assumed they would get me once Timothy's body would arrive. by pure coincidence i walked outside and here was the black car with Tim’s body inside. i watched 2 men them slide Tim's body in an opening. i was so pleased that the same man who picked Tim's body up on tuesday night accompanied him all the way through. he was the one bringing him yesterday to the chapel in the funeral home for me to identify -as they call it - and the one driving him today from Manhattan to the Bronx. the 2 gentlemen were so surprised when i told them that i wanted to come down into the cremation room. a grey room in the basement. they rolled the box in, closed the door, i folded my hands to my front and my heart and send Tim's body off into the fire and prayed for his soul to have a final departure.
i sat for 5 minutes in the chapel and then went out for a very long walk - 3 1/2h - a most beautiful white crane who i met at the edge of a lake looked at me, then flew up, high up on a branch of a very tall tree, sat there quietly for 20 minutes or so, then she flew off east. i felt such a strong connection that i was sure she (that was just a feeling and of course would please time more then a he ;-) carried Tim's soul off.
i was talking to Tim crying and at the same time really letting him go. i caught myself several times thinking that i have to bring Tim here that he would love the quietness and the beautiful trees. forgetting that he is in my heart and can experienced it in his air/ether (the upper regions of space; the clear sky; the heavens.) form.
lots of love
monika