Goodbye, Bone Marrow Boogie

Not that it hasn't been a million laughs, but it is time for this blog to end.  Those who are interested, please feel free to follow me to my new blog, Widowhood 101.  Here's a link to take you right to it:     http://widowhood1.blogspot.com/


I know not all of you will be coming with me, so before I sign off for the last time, I want to thank you.  You have all been so tremendously supportive.  Roger and I both appreciated your concern, your words of wisdom, basically, just the fact that you paid attention when we needed you to.

 

Thank you. 

 

 

Dear Roger...

Dear Roger,
Not all your clients have heard that you are no longer here.  They keep calling to offer you marketing projects.  What should I tell them?

Your work is appreciated.  Look at the nice tribute the Montana Cancer Institute has given you.

I still cry.  Not all the time.  But at the most unexpected and inopportune moments. I miss you a lot.

Love,
Candi

What's Next?

One week.  Two weeks.  Three weeks.  A month.  If I've survived this long, does that mean I'll survive the long haul? 

My life is suddenly so very different.   I went from being on duty as caretaker and jack-of-all-trades 24 hours a day, seven days a week, to having no one to care for but myself.  Well - and Sophie, of course.  Those who are left behind must transition too.

I wonder if there is such a thing as post-leukemia PTSD?  If there is, I've got it. 

What happens after the worst has happened?  I don't miss the damnable disease, the distress or the anxiety.  I don't mind being alone.  I just miss Roger.

Sophie Mopes

Sophie has taken up residence in Roger's chair in the kitchen.

 

 

Sophie is used to being walked 5 times a day.  I'm not kidding.  By her rules, one of those walks each day should take about an hour and go through Greenough Park or along the Clark Fork River trail.  You can see why she mopes and misses Roger.  I walk her as much as I can, but I cannot accommodate her to that extent.  It's the first-thing-in-the-morning and last-thing-at-night walks that I'm finding most  difficult now.  I have only been sleeping every other night, so some nights it's hard to stay awake for Sophie's last walk.  Some days it's hard to get up early for her first walk.  (I have made a doctor appointment next week to see what can be done about this sleep situation.)

 

Soon I'll go back to work.  Sophie will go to day care at Ready, Pet, Go 3 days a week.  Romping with other dogs will help her burn off some of her anxiety.  It's fun for her and less worry for me.  Eventually Sophie's first-thing-in-the-morning and last-thing-at-night walks will help me solidify a routine for myself so that I can sleep better.

 

Things are a little rough right now, but Sophie and I are working it out.

A Fresh Start

I made a little progress on paperwork today.  Roger had not opened the mail since October.  He didn't have the energy for it.  I had no idea that bills weren't getting paid or I would have done it.  I'm sure he kept putting it off, thinking he would feel well enough to tackle it before too much time had passed.  By the time we came back from the hospital in Salt Lake, he was far too ill and I was far too busy to think about it.  So...it's time for a fresh start and a new filing system so I can keep track of things.  The stack of paper on the dining room table is slightly smaller tonight.  And, the work will continue...  I still haven't received a death certificate, so much business is on hold.

While we're on the topic of fresh starts, I painted a small accent wall in the living room.  Robin's Egg Blue.  I'm not sure I like the color.  It's brighter than the taupe we had before; it will take some getting used to.   But it's what I need, the same comfortable old home, but with a clean, fresh start. 

Overwhelmed

Taylor and her sweet little French Bulldog "Cho" left yesterday.  Today was my official first full day alone. 

I wonder, of all the thousands of generations of men and women who have lost family members since the beginning of time,  how can we, as a society, remain ignorant of how to deal with grief?  Maybe there are no "tips and tricks" that can be passed from one generation to the next.  Maybe it can only be learned first-hand.

I set this day aside for paperwork and got nothing done on that score.  Many business processes on my "to-be-done" list require a death certificate and I haven't recieved one yet.  As of this morning, Roger's doctor had not yet signed it.  If I weren't so exhausted, I would be outraged.  So instead of working on insurance, credit cards and bills, I spent the day organizing, sorting and crying over Roger's photos, journals, and artwork.  Why did I only get to have Roger for 20 years?  It was too short!  Too short!

I know this all seems too grim to blog about.  It's just the truth.  I can't get around it; I have to go through it.  But I don't blame you one bit if you decide to stop reading the Bone Marrow Boogie.

R Merrill Creative Direction: Not in Service

 

I am in the process of closing down Roger's business.  You can't believe the number of backup DVDs, external hard drives, computers and paper files that Roger kept.  If I ever had to lay my hands on a specific file, it's doubtful I would be able to.  A single file would be one fish in a very large sea of data.  Many of the files are labeled "specialized" or some other generic file name. It's like having everything you own labeled "miscellaneous."  Thank you, Roger!  It has all gone into storage just the same.  Recycle bins and shredding bins are full to overflowing with paper files.

I am also trying to get in touch with his colleagues and clients.  The "causes" that Roger worked for: education, cancer, the ACLU, the democratic headquarters, and others...many others... have expressed effusive thanks to Roger for the and extremely talented work he did for them.  Some of  Roger's clients, affliates, and organizations that he did volunteer work for are still not aware that he has passed away. So, sadly, I find myself telling the story of his passing over and over again.

Going through Roger's paperwork to identify accounts payable and accounts recievable, I find the payables far outweigh the receivables.  I guess that's to be expected.

The work continues....

No Service

I guess I should have mentioned this before, I just wasn't thinking.  That's hard to believe, I know. 

There will be no memorial service.  Roger and I talked about it and this was his decision.  Our friends and family are spread all around the country.  It would be difficult and costly for many or most of you to travel to Missoula for a brief service.  As much as he loved drama, Roger didn't want to create inconvenience, unnecessary expense or guilt - certainly not guilt - for anyone.

Whereever you are, take a moment, raise a glass and make a toast to Roger.  That would put a smile on his face.

I thought I was ready

Roger battled leukemia for 8 years, almost to the day.  So I had some advance notice to ponder widowhood.  I thought I was as ready as I could be, but I was wrong.  There is no way to anticipate this.  There is no way to prepare.  I told Taylor today, "it's like moving into a new house and not knowing where the light switches are -- but on a much, much larger scale."


June 5

Blow out the lamp & the moths quit
fluttering against the glass
before the wick stops glowing.  That other
sound?  Words flapping at the dim pane
of the mind long into darkness.
                                               --Samuel Green

Roger Merrill: April 2, 1947 – January 18, 2013

I think that we can all agree that over the past few years, Mom has been most eloquent keeping you all abreast of Roger’s battle with Leukemia.  So today I take a turn at updating the blog.  The news is not good, but is not bad either.

Roger had a peaceful passing last evening, surrounded by what he considered to be his greatest love, his friends and family.  What is it about this news you ask, that is “not bad”?   Roger battled Leukemia fiercely for several years, even winning the battle, and rising to the coveted “cured” status, albeit briefly.  He never took his health, life or loved ones for granted.  He lived life to the fullest, had a love for Mom that was unmatched.  He held a strong belief in the power of a positive attitude, and a good sense of humor.  He cultivated happiness.  He was committed to doing work in advertising and communications that made a positive contribution to the world.  

Roger passed last night just as he had wished, no pain, no suffering, just drifting off in to a peaceful slumber.  Dignified, so I say…”not bad”.

Roger Merrill, you will be forever in our hearts.

--Taylor

The Door

Referring back to the poem sent by Roger's brother and posted on this blog on Christmas Eve...The door is standing half open before Roger again.  It seems likely he will go through it soon.

He is sweet and funny as ever, even in this.

Downhill Slide

Roger's condition is declining noticeably day by day. 

He is no longer able to get out of bed to bathe. Sponge baths will
have to suffice.  Low oxygen is a serious problem, and as a result, he is often
confused.  Friends, we do appreciate your calls and emails, but please understand, Roger is not reading emails any longer and he can speak on the phone only on rare occasions and for very brief periods of time.  He gets out of breath and confused in conversation.  He has begun using orally administered morphine to relax his lungs so that he can breathe a little easier.

On a positive note, Roger is not in any pain.  He sleeps most of the time.  When he's awake, he maintains his sense of humor, his sense of adventure and his sweet temperment.

Paperwork Progress

Processes have been started.  Wheels are turning.  Insurance claims are pending.  My dining room table is spread with paperwork: Primary insurance, Secondary insurance, Community Hospital Missoula, LDS Hospital Salt Lake.  Medical bills and Insurance statements.  And the regular household expenses, of course.  The first step is organization and that's about all I've done today.  Roger felt up to making a couple of key phone calls to get the ball rolling.  Because he has dealt with the insurance companies as recently as a year ago, and because his case is particularly lengthy and complicated, he really wanted to handle this for me...or at least get it started.  And I appreciate his help.

As part of this sorting and organizing process, I ran across a folder that I had put together in 2005 when Roger was first diagnosed with leukemia.  It was full of emergency contacts, doctors  names, perscriptions, and miscellaneous notes.  How sweetly naive of me to think I could conquer leukemia by the force of supreme organization.

Casey left early this morning.  I'm sad to see him go, and SO glad he was here.  I couldn't have gotten Roger home from Salt Lake without Casey's help.  He's smart and compassionate and says all the right things.  I am lucky to have a Casey in my life.

Taylor decided she wasn't ready to leave yet and THANK GOD for that.  She is being so helpful in every sense of the word.  She is practical, helps with the work of taking care of Roger, and she lightens the mood at the same time.  Her help and her company is delightful.  I do have to chuckle that Taylor came to Missoula prepared to spend only a few days.  She didn't pack enough clothes and the clothes she did bring are not appropriate for January in Missoula.  So, she is having to run out and buy extra socks and underwear.  Didn't I just go through that in Salt Lake a few weeks ago???  Like mother, like daughter.

Tuesday January 15

Today has been a really busy day.  We've had visits from the Hospice nurse, equipment guy and social worker -- all seperate visits of course, so it all took time.

No big news.  Roger hasn't gotten out of bed today.  The incident yesterday with him feeling faint and almost falling scared us both.

Roger is my inspiration.  He has a such great attitude and sense of humor.  I put a meditation gong next to his bed so that he could ring for me if he needs help.  He said "Okay, that'll be one gong for you and two gongs for God."

A Roger Joke and a Candi Joke

For Roger:
Q.  How many art directors does it take to change a lightbulb?
A.  Does it have to be a lightbulb?

For Candi:
Q.  How many bureaucrats does it take to change a lightbulb?
A.  Two.  One to assure everyone that everything possible is being done while the other screws the lightbulb into the water faucet.

This is no joke.  We had a very scary incident in the bathtub today.  Roger didn't have enough oomph to get out and not enough oxygen to stand up once he was finally out.  We now have a new oxygen hose system and will be getting a bath chair from hospice so that never happens again.

Sunday, January 13

Roger is sleeping pretty well (between bouts of coughing).  He is eating better than he has in a month.  He says he feels pretty well.  I could almost fool myself into believing he is getting better.  I have to remind myself that he sleeps most of the time and , for all intents and purposes, he has not been out of bed since early December.  I have to remind myself that leukemia is creeping, sneaking and multiplying.

This week Roger wants to visit his oncologist's office.  There is no help from that quarter; I think it's more of an emotional need.  But if he wants to go for a visit, we'll make it happen.

I need to get myself to the doctor this week too.  I need to shake this cough that I've had off and on for the last few weeks once and for all.

We've had lots of messages of love and concern and thank you all for that. 

Things are going okay.

Oxygen

Roger has Aspergillosis, a lung infection like pneumonia caused by the Aspergillus fungus. This is, unfortunately, one of the most common and most threatening illnesses that afflicts bone marrow transplant patients. The infection is largely under control thanks to the massive doses of intravenous antibiotics he had while he was in the hospital, but the remnants remain and Roger's lungs are permanently damaged. So we have a fancy new appliance at our house - an oxygen concentrator.

This machine takes in air from the room, separates and delivers oxygen it to the patient via a nasal cannula (a little air hose under the his nose.) Roger is on 10 litres of oxygen per hour, 24 hours a day. The concentrator makes a lot of noise, so we keep it in the bathroom with the door closed. The hose runs under the bathroom door, around the edge of the bedroom, under the rug, to Roger's side of the bed. This arrangement is quieter than the oxygen delivery system he was on in the hospital. Because it's less annoying, he is willing to keep it on. And that's a good thing, because he needs all the oxygen he can get.

Aspergillosis is life threatening and Roger has had a severe case. What could be worse? Leukemia. While Roger's body tries it's best to fight the lung infection, leukemia cells are increasing. It has become unstoppable.

I usually try to end each blog post on a positive note but, gee, I just can't think of an upbeat thing to say today. I am hanging in, but I don't feel perky.

Saturday at the Merrills

We are setting up a baby monitor so that Roger can easily let us know when he needs something.  I thought you might enjoy this quote of the morning.

Mom to Casey:  "You should read the directions."
Casey:  "Mom. I'm responsible for upwards of 100 million dollars of military electronics equipment.  I think I can figure out a baby monitor."

Roger had a good night, ate a pretty decent breakfast.  Now he's gone back to sleep.  Casey will stay with him while Taylor and I run some errands.

Friday - Trying to Find a Routine

I still haven't managed to unpack suitcases, do laundry or look at the mail that came while we were away.  Taking care of Roger is keeping me surprisingly busy.  Even with Taylor here doing here doing the cooking, and Casey shoveling the snow, there is still so much to do.

Roger is so appreciative of being home.  So is Sophie.  She has been patiently laying at the threshold of the bedroom door for 24 hours.  She is so sweet and gentle and sees it as her solemn responsibility to guard the bedroom door where Roger rests.

There is no change in Roger's condition.  He says he feels a little better, but I think that has to do with being home and getting some better rest.  There's more variety and better quality food here.  And lots of love. 

Thursday - Home

Just a quick update to let everyone know we made it home without incident.  Thanks to Casey's expert packing of the car so that we could fit oxygen bottles in and his steady driving, we made it home by 9pm - just in time to miss an incoming snow storm. 

Roger did very well in the car, but was glad to be home in his own bed.  He is still sleeping this morning. 

Taylor is here making soup and lightening the mood. 

Hospice will be here at noon for an intake visit.

Thank you to EVERYONE that sent thoughts and prayers for safe travels.  We made it home.

Tuesday

Casey is here.  We spent the day today fretting and running in place trying to figure out if our car will accommodate an oxygen generator.  After a day of counting outlets and trying to get information, we discovered it's not feasible for the amount of oxygen Roger needs.  So, it's back to Plan A, a car full of oxygen tanks or, as Roger calls it, a bomb.

It's going to be a hellish drive with a stop-over in Idaho Falls to drop off empty tanks and replace them with full tanks.

Casey's job is to keep the car on the road, my job is to keep the oxygen flowing, Roger's job is to keep from having a crisis until we get there.

Roger thinks he can do this and he wants to do it.  So we're doing it.  We leave SLC tomorrow morning.

Monday Late Update

Correction.  We will not be leaving Salt Lake on Tuesday morning.  There are too many details that need handling.  We need to make sure hospice is set up and ready to meet us at the house and that they have oxygen ready when we get there.  So we will leave Salt Lake on Wednesday morning instead.  The plan has changed so many times today that I can't even keep  straight in my mind which version of the plan is the correct and current version.

Shelley and Lynne, thank you so much for the lovely visit this afternoon.  Sweet.

Monday

There is a lot to do and not much time to do it in.  I only meant that as a description of today, but, having said it, it now seems as profound as any statement about life.

The leukemia continues to grow  and Roger's body is losing the battle.  He will be discharged into Hospice care tomorrow.  The logistics of getting him home to Missoula are difficult because of the quantity of oxygen he'll need to get there. 

This afternoon I'll pack up the hotel room and gather all Roger's extra things from the hospital room and get the car packed.  We'll hit the road after breakfast for one last road trip.

Sunday

I can be with Roger today as long as I stay masked and gloved.  Why, are they afraid I'll give him a disease??

Today's blood counts show that the leukemia cells have increased again.  There may be some signs of the T-cells doing something...but what?  It seems it's a case of too little, too late.

Roger has had enough.  He wants to go home to Missoula, but the trip is complicated by the large quantity of oxygen he would need to get there.  An ambulance is a possibility, but if he is going directly into hospice care, our insurance won't pay for a 530 mile ambulance ride. 

This is surreal.  We have been having some matter-of-fact conversations about what will and won't happen, what can and can't happen, interrupted by the occasional perky nurse or nurses aide bouncing into the room cheerful and oblivious.  You would think such a personal and intimate conversation between a man, his doctor and his wife could be left uninterrupted, but no, perkiness intrudes.  You would think that in his final days a man could make decisions about where he wants to be without consideration for what the insurance company will pay for.

Tomorrow we will have a meeting with the team to discuss practical considerations and hopefully to make a plan to go home.

Saturday

I owe you an update.  This is difficult on several levels.  I haven't been able to see Roger myself since Wednesday.  Or was it Thursday?  I've lost track of the days.  I am so completely wiped out by this chest cold I can't even think straight.

I have talked to Roger on the phone, and that's reassuring, but it's frustrating not to be able to get the information first-hand. Good news: Roger managed to eat 1000 calories yesterday!  And the infections are still improving with the help of many, many antibiotics and antifungals.  Bad news:  the leukemia cells are increasing.  We are still waiting to see if the donated T-cells are going to be able to start manufacturing good blood cells.  Without them, Roger won't stand a chance against leukemia.

You know what to pray for.  Go T-cells, go!

Not Our Best Day

I am in the hotel with chills, fever and a racking cough.  They won't allow me in  the hospital, and rightly so. A contagious virus could wipe out every patient on the Bone Marrow Transplant ward in one fell swoop.  So I'll do the right thing, and wait it out here, but I'm not happy about it.

I have tried to call and haven't been able to get any information about how Roger is doing today.  He is not alert enough to pick up the phone and call me.  Did someone tell him I'm sick, or does he think I abandonned him? 

This is not a happy day.  :-(

Eat It Like You Mean It

When Roger was admitted to the hospital 2 weeks ago no one expected him to live.  He said he wanted a "no heroics" approach, meaning, he would get the T-cell infusion and allow the hosptial to treat his infections as long as treatment was not intrusive.  He did not want them to do anything more aggressive to save his life. No transferring him to intensive care, no feeding tube, no breathing tube... nothing like that.  They offered him food but didn't pay attention to whether he ate it or not.  They allowed him to lay in bed for two weeks. 

Today Dr. Peterson came in and gave us this message in no uncertain terms. The fevers are down, the infection seems to be getting resolved.  We still don't know if the T-cells are going to be able to start producing blood cells.  Until we see if that's going to work, we should proceed as if you will get better  So, eat.  Get out of bed and walk.  If you want to get better, this weight loss must be arrested.

I jumped in the car and went down the hill to a Carl's Jr for a double bacon burger.  Roger only half of it -- but even half is sure to have more calories than the chicken noodle soup he's been eating. 

When Finn Petersen says "jump," we say "how high?"

New Years, No News

Roger looks better and feels better than he did when he first checked in to the hospital 10 days ago.  There hasn't been much change over the last 2-3 days though.  He sleeps about 20 hours a day.  He is on a constant IV drip with antibiotics, and he's on oxygen 100% of the time.  Illnesses don't follow their regular course in the bodies of people that have no immune systems.  A little virus that would produce sniffles in you and me could be a death sentence for someone that doesn't have any white blood cells to fight it.  An il virus that would make me ill for 3 days, can hang on and on and on in a person with no immune system.  That's why we wash our hands, sanitize our home surfaces and wear gloves out in public.  You can never be careful enough -- obviously we were not careful enough.

There is no talk about moving Roger back to Missoula.  It has been 10 days since he had an infusion of his brother's T-cells.  The talk now is to just wait a little bit longer and see if they can see any signs that those T-cells are getting to work to help fight thi infection.  Whether it works or not, the next few days will help clarify our next steps.

I always make New Year's resolutions.  And I'm usually pretty good about keeping them, too.  2013 is off to such a rough start, I can hardly think what I would want to do beyond just surviving it.

I finished the courswork for my MPA Degree in December.  I have only to turn in my graduation application, my portfolio and one final writing assignment.  The grad application is due by January 15th.  I wonder if I'll make it?  I wonder if Roger will get to hold my diploma in his hands?