Tuesdays With Mary

Final Thoughts

Note: This posting is something I worked on several times shortly after my mother died as a kind of conclusion, but I was never able to complete it.  I never liked the idea of having a final post, so I suppose that's why I had so much trouble with it. As we are approaching the anniversary of her death, I am now posting it as is, along with one of my favorite pictures of my mom from September 2005, before she restarted chemotherapy. 

July 23, 2006

This may be my final posting on TuesdaysWithMary. At least, that's the plan. My mother passed away two and a half weeks ago and I've been stalling writing some kind of conclusion. There have been some tough days in the last couple of weeks. More than I would have expected. I know that there is a normal "grieving process" that you have to go through but knowing it and experiencing it are quite different.

I've had dreams where my mother was still alive, in her late stages of fighting cancer. That's quite haunting. And then there's just the normal thoughts that occur when I think about things she would like or something I would have told her. And sometimes there's emotional ups and downs that come out, seemingly for no reason.

Despite all the difficulties we've gone through in the last nine months, it has made us closer as a family. That can't be a bad thing. I'm glad I was able to spend time with my mother and grateful that I had flexibility in my job to be able to get to Florida so many times in the last year.

About a week before my mother passed away, I asked her if she had any regrets. She answered simply: "Sure." But she wasn't one to elaborate on negative thoughts. I have some regrets also, but they are pretty minor. I wish we had all gotten together at Christmas last year. But I don't think my mother minded, so I guess I shouldn't either. There will always be things I will miss about her. What would my mother think about this or that.

My father told me that if he had to do it all over again he might not have had my mother go through all the chemotherapy she did in recent months. Once the chemo stopped working, all she got out of it was the side-effects that weakened her and made her ill. But you always want to give something like that a chance, just in case. And there's no doubt that the chemo she had in earlier on extended her life by several years. So I don't know if anyone could decide differently under the same circumstances. Still, it's something for families to think about.

Christmas Without Mary

This was our first Christmas without my mom.  Gregg and I flew to my younger brother Tim's family in Phoenix and we were joined by my brother Mike, his family and my father.  It was not the entire family, but there were nephews and nieces to ensure that things were lively.  But there were times when it was very noticeable that my mom was really gone.  It was the thing that was on everyone's mind even if we did not speak about it much.

I was sad on Christmas day, but I realized that the things my mother appreciated, the festivity, the kids running around, she would have greatly enjoyed.  I'm sure she would have been playing Guitar Hero with the boys and laughing right along with them.   That image of her laughing and having fun let me relax and enjoy the day. That's what my mother would have wanted. 

Tim said a prayer at dinner and got everyone choked up.  He was very close with my mom and I think he is still taking the loss quite hard.  There's a tension there that I have not seen before with him; he's usually the most easy going and social guy, but there were times on this trip when he seemed distant and preoccupied. 

It's freaky, because it just catches up with you once in a while.  There have been many times over the last six months where I've woken up and thought "I should call my mom to --" and then the realization hits me that my mother's not around any more.   But I still think of her often.  I hope that she's proud of what's going on in her children's lives and that we are all living up to the potential she saw for us.

In My Mother's Words

Just after my mother died, we discovered a sprial bound journal in which she had written a diary of some of her feelings when she was first diagnosed with cancer and started chemotherapy.  She was not a consistent writer and she never mentioned it to us; perhaps she had forgotten about it. 

The writing is raw and personal, covering her thoughts on cancer, her hysterectomy and chemotherapy.  It is weird to read it because it shows a more vulnerable and emotional side than my mother would normally demonstrate.  I've had the diaries sitting on my desk for several weeks and I've just not been able to face them.  But as I read them today, I felt a closer connection to my mother andthe overwhelming feelings she was going through.

Here are a few excerpts:

April 29, 1999 - Hysterectomy
This is my journal, so Ibelieve I can swear all I want to.  Today we saw Dr. Manus (chemo) -- overwhelming-- 3 hrs there -- I feel that I had no control over what is happening.  Would like to run away & hide.  Linda called -- we both cried.  Somehow I have to get this together and just think of today.  I'm sorry for Bob.  I know all this brings back memories of his mom. 

May 25, 1999
I think that I will soon wake up & have had a bad dream!  This would have been so much easier if it had been beningn.  Walking 2x around the block -- not a lot of energy.  Tomorrrow I begin chemo w/ some fear & yet anxious to get on w/ it. 

Bob has been so good -- we decided this AM that we would just pretend we got back from Paris & no phone calls from Dr Bowles!  Right!! 

Patti wanted me to come to last day of Orlando Women's Golf today, but I am not too good w/ a lot of people.   I would probably start blubbering.  Last time I played at TMC I had an 80!  Next year I'll beat that.  I can practive my putting in the hall & I know it will pay off!  Tim told me I should get more strokes because I have cancer.

Cameron (night hawk) is being crazy baby again.  Cries 4 a while then "bombs away" in his diapers... Gets in rocker w/ light on & reads book -- Kelly rocks him again at 10pm & off he goes.  He is trying, but funny.  When he gets on the phone he sings "Happy BD" -- there isn't a word you would recognize unless you heard it a few times -- but he repeats same each time.

June 2, 1999
Had first chemo on Weds May 26.  Put in port on Thurs 27th.  At first I thought I was home free, re reaction as wed night just tummy ache for a  few hrs... Friday am the abdominals searing pains started.  Worse on Sat. & Sunday -- exhausted -- tylox didn't touch it.  Nausea was not helped w/ pill.  Sunday pulse started racing 120.  Called Dr on call Mon for same thing -- he was more concerned w/ the sharp pain (by this time pain had stopped).  It was anxiety or this poor old bod trying to recover.  I could not do this again unless we could control pain.  I feel like one thing gets functioning a little better, something else goes!

June 3, 1999
First day of normalcy.  No muscle aches, no nausea.  I even vacuumed a bit and felt good. 

June 8, 1999
A good past few days.  Sometimes I even forget I have cancer.  Bob and I played 9 holes yesterday.  Felt a little sore last night.   Orland Womens played a pro-am tournament here today -- felt some resentment that I couldn't be there.  Also a little sad --my hair has started!  Patti, Linda, Joan came over after playing -- good to see them. 

June 9, 1999
A C- day.  Hair falling out -- tried on wigs.  Short w/ Bob!

June 14, 1999
Yesterday boys' BD.  Feeling low -- probably the hair loss.  Will look 4 wig today.  Doris gave me a cute short one.  They are still hot and uncomfortable.

June 15, 1999
Feeling tense about chemo tomorrow (fear).

June 17, 1999
Long day at chemo yesterday.  Feel great.  No side effects.  I feel more acceptance for my cancer.  At the beginning I thought mostly about dying & where else the cancer would show up.  Now I mostly feel that we will get thru this ok.  It's fun to wash your hair w/ a washcloth!

June 19, 1999
Feeling wiped.  Guess the chemo is doing its job.  Hate looking at my bald head.  Have a rash on head. Energy gone!

July 1, 1999
Dr. Malmus says I have "garden variety" cancer.  Blood good.  2 wks on -- 2 weeks off.  Sometimes I have tremendous fear re future (cancer).  Other times -- very calm -- I know I have no control over this and that is frightening.  Wish I had more energy. 

July 8, 1999 Chemo
Shorter time, but seemed longer.  I didn't know any of the patients, so I missed out connecting.  Some days up some days down-- try to live in the moment. 

July 10, 1999
Chemo has been easy this time -- lots of energy. I feel strongly that everything will be ok.  Que sera, sera. 

July 12, 1999
Feel strange today -- tough to stay positive.  I feel afraid at times that this may spread.  I need to stay focused on the "now."  Had a beautiful card from Kelly today.  Very supportive & made me cry.

July 16, 1999
Yesterday chemo.  Whole digestive system messed up.  Hope tomorrow will be better.

July 26, 1999
2 bad days -- upset w/ appearance -- moon face & cone head.  Most days it doesn't bother me.  Last 2 days it has me crying, listless & pissed. 

August 26, 1999
Chemo side effects have been minimal.  I fluctuate between accceptance & fear.  The fear is to get so sick that someone helps you move etc.  Sometimes happens when I see very sick patients at MD Anderson. 

September 9, 1999
Feeling really down.  Keep thinking this has been a bad dream & I'll wake up & be fine.  Will have chemo tomorrow. 

September 13, 2000
Well it has been a long time since I have been here!  Last 6 wks have been shitty.  CA 125 -- will find out Sept 20 what this one was (208).  Not even a year since I finished chemo!  Don't feel any "why me" just am angry -- weepy.  Won't see my grand kids graduate or get married.  Had scary feelings.  So mixed up.  God doesn't feel very close. 

October 14, 2000
I hate coming here just to write feelings of hopelessness.  Because most days I feel like me and have good laughs. 

We have just finished a Women Playing for T.I.M.E tournament for MD Anderson.  It was extremely sad at times.  There were stirring comments on Sheila -- all of us were in tears.  Elaine was so strong & Sheila's husband & daughter read some of Sheila's notes.  Her thoughts & feelings were so positive and she seemed so much at peace with herself.   She had told her grandson that whenever he saw a dragonfly it would remind him of her.  We received one in our "goody bag."  So I have it in my bedroom so I can see it all the time & think of Sheila and her strength and hope that some will rub off on me. 

We raised $500,000 this year for T.I.M.E.   I really think the cure is close & I want them to work on Ovarian cancer now!!  Looking forward to Xmas w/ Karen & Mark, Brianna & Faith, Mark & Gregg may get here as well. 

I keep hoping that this cancer will make me a better person.  I seeem to be a slow learner re attitudes, people that I don't like etc.  I should be able to let them be as they are & drop it.  Easier to say!

Mary Urlocker - Rest in Peace

    

From the Orlando Sentinel

Mary L. Urlocker died July 4, 2006 after a seven year struggle with ovarian cancer.  She was born in Deseronto, Ontario.  She is survived by husband Bob of 50 years and five loving children: Karen, Shawn, Michael, Mark and Tim as well as a sister Carmel Troxell of Allentown, PA and brothers Raymond and Ted of Toronto.  She was also blessed with eleven grandchildren. She was a Registered Nurse from St. Michael's Hospital in Toronto.

Mary's funeral mass will be celebrated at Annunciation Catholic Church, Altamonte Springs, Florida on Friday July 7 at 10:00 am where she received much comfort and inspiration in her fight against cancer.  She was a member of Errol Estate Country Club, the Orlando Women's Golf Association and Women Playing for T.I.M.E, a charity for MD Anderson Cancer Center in Orlando where she received loving care.  She enjoyed competitive golf and developed many close friends who will remember her bright smile.

In lieu of flowers, the family asks for your prayers and for donations to be made to:

Women Playing for T.I.M.E
In memory of Mary Urlocker
3160 South Gate Commerce Blvd, Suite 50,
Orlando, Florida 32806

• MD Anderson Cancer Center: History, Information

The Last Breath

My mother was no longer conscious this morning.  Each of us were in with her in the final hours, holding her hand, speaking softly.  I put on some Jimmy Cliff music that she liked and sang quietly to her the song "Many Rivers to Cross."

Many rivers to cross
But I can't seem to find my way over
Wandering I am lost
As I travel along the white cliffs of dover

Many rivers to cross
And it's only my will that keeps me alive

A few hours later, her color was fading.  Her breathing was still erratic with pauses of ten to fifteen seconds between breaths.  All of us gathered by her side.  My sister Karen said the rosary along with my father and my wife.  Two nights ago she had called for Karen and whispered "hail, hail" asking for the rosary.  Tim and I held her hands.  Kids were outside playing.  After one decade of the rosary, that is, ten Hail Mary's, she stopped breathing.  The nurse checked and there was no pulse.  I left her side and I held my wife.  Everyone cried. And then after another two minutes that seemed like an hour, my mother gasped for air.  She was always a fighter and she would not let go. 

She began breathing again, still erratic, still noisy.  We waited.  And then Karen resumed the rosary.  When she completed all five decades of the rosary about ten minutes later, my mother finally let go.  We waited a couple of minutes to be sure.  We said our final goodbyes.  My father kissed her for the last time.  And then the nurse turned off the oxygen pump and everything was quiet.

Waiting

Last couple of days we've been camped out at my parents' house.  People are sleeping on couches or on the floor wherever they can.  My brother Tim (pictured above) has not left the house since he arrived; he wants to stay close to our mom.  His wife Kelly and two boys are flying out tonight which will be good. 

Yesterday I was pretty discouraged.  I managed to go for a run around 10:00 pm for an hour and when I got back I felt normal for the first time all day.  Unfortunately, everyone was asleep. 

It's hard to be here, but its also hard to be away.  We're all just waiting and there's not much we can do at this stage.  Nurses from the hospice are here around the clock and that's been much appreciated.  They are doing the best they can to keep my mother comfortable.  But she's not responding much anymore.  I think she can still hear us and once in a while she will say something, but mostly she is resting. 

Her breathing has become a noisy death rattle  due to retained secretions in the upper respitory area.  Her breathing is also irregular with deep breaths with long pauses, known as Cheyne-Stokes respiration.  I think she is close to the end.

• Palliative Care: Predicting Active Dying
• Hearts Way Hospice: As Death Approaches

Fading

I caught a flight out from San Francisco to Orlando today.  I got to my parents' house around 11:00 pm.  Everyone was asleep except for the nurse and my wife.  Today was the first day that my mom did not get out of bed.  A couple of times she wanted to get up, but she just didn't have the strength. She hasn't been able to swallow food or liquid today.  She has tried to speak a few words, but not too much.

Earlier in the evening, my brother Tim put his ipod headphones in my mother's ears and played some irish songs including Danny Boy.  She responded to the music and moved her feet to the beat. 

The photo above is me, tired and discouraged.

Resilience

My mother had a resurgence today, perhaps owing to my father's birthday.  Or more likely because she's been sleeping better with the help of Haldol, a new prescription the hospice nurses have put her on.  She is not talking much, but she managed to sing my "Happy Birthday" to my father. 

My wife made a cake for my father and my mom had a couple of bites and a sip of champagne.  Later when she was standing in the kitchen and a Bob Marley song came on, she reached for my father and danced with him.  My parents have been married fifty years and its they love eachother as much now as they when they first met. 

The hospice is now providing round-the-clock nurses, which has been helpful.  The doctor says my mother has been extraordinarily resilient.  I don't know where she gets her strength from.

• MentalHealth: Haldol

The Last Goodbye

The photo above is from my mom's graduation from St Michael's College nursing school in Toronto when she was twenty-two.  She's seventy-three years old now and won't live much longer. 

I've said a lot of goodbye's to my mom in the last year.  She survived ovarian cancer for more than six years and three different rounds of chemotherapy.  But this past Christmas, I knew she would not last the year.  Chemotherapy wasn't working anymore and so it was just a matter of time.  My parents are very strong and they didn't want to worry anyone.  So they just quietly went down the path, worked through things, made arrangements, accepted what was happening. 

And over the last six months we've all done plenty of the same.  I've flown out to visit my parents, sometimes on red eye flights, sometimes just for a few days, to try to get more time. She outlived the doctor's predictions and and eeked out a few extra months.  But now there is no more time. 

With every trip to see my mother, I've treated it as if its the last time.  I've made sure to say everything that ever needed saying.   But even after doing that, there is always one more thing.  I can't help but think of a million questions that now can never be answered.  If we could string them all together, my mother would live forever.  But she won't and it's tearing me up inside. 

I've told my mother I love her.  I've thanked her for raising me.  I've told her all her kids turned out right.  I've told her my dad is going to be ok.  I've told her she's going to go to heaven. And yesterday I kissed her goodbye for the last time.

As much as you prepare for the last goodbye, it hurts.  It really hurts. 

Day by day you see someone you love dying in front of your very eyes.  Day by day, she is weaker.  She is less focused.  She is less there.  My mother is tiny and fragile.  She is skin and bones.  And the things that made her who she is are rapidly fading away.  Her humor, her smile, her sparkle, they are mostly gone.  She is strong willed which is good to see since that's what has allowed her to survive so long, but even that is fading.  She told me the other day that she wished she could end it.  "Getting sick is a bugger," she said.

I comforted her the best I could.  She cared for all of us over the years; I could never pay her back in a life time, let alone a few days. I showed her pictures and remind her of times when I was growing up. I recalled our camping trips, or when we used to go skiing, or visits with cousins and aunts and uncles.  She remembered them along with me.  Or seemed to.  Sometimes, she was distracted just trying to breathe.  Once in a while she was confused.  But mostly she took it all in.

She can still talk a little, but not much.  Her breathing is labored and I know it will stop at some point.  And then she will be in a better place.   

Taking a Trip

My mother is in the final stages of dying.  When we were first putting her to bed last night she was saying she needed to get ready to take a trip.  She wanted to get her shoes and be ready to go.  My father asked where she was going and she said "Arizona," where my brother Tim lives.  My father told her it was very hot there and we would go later.  She seemed ok with that.  Later we learned from the hospice literature that it's normal for someone in the final stages of dying to feel they are making a journey.  Which of course, they are.

My wife and I stayed up most of last night with my mom.  She slept a couple of hours but was coughing and had trouble breathing most of the night, so none of us got much sleep.  We gave her water and helped her get to the bathroom when she needed to.  She is still coherant and knows what's going on.  "I'm sorry to be a nuisance," she said at one point.  And later on, "I hope you don't get what I've got."  She also told me "You've got a real gem there," referring to my wife.  Yes, I do. 

He breathing was troubled; there is a lot of fluid build up in her lungs and it creates a haunting "death rattle" or wheezing sound.  This has been going on for a few nights now.  I understand better how hard this has been for my father; he stayed up three nights in a row tending to my mother.  He's been very appreciative of having the help. 

Around 7:00 am, my father got up and I crashed in the guest room for a couple of hours.  I'm glad that my wife and I have been able to come out and help and provide comfort to my mother.  It is not easy by any means, but it feels right.

I'd like to ask everyone to keep my mom in their thoughts and prayers during this final stage.  If you want to post comments on the blog, please do so and I will read them to her.  You can do this by clicking on the link below any posting that says "Comments".

For anyone who is going through a similar process, I encourage you to read through the document below or materials from Hospice to understand the "arc" of dying.  I found it very comforting to know what will happen at each stage and that there is a normal sequence to things.  There is very practical information that will make things easier and more comfortable for everyone.

• Kokua Mau: Last Stages of Dying,  PDF
• Caregivers Guide: How to Provide Comfort Duringthe Final Stages