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?