More, Since You Asked...

As Garrison Keillor would say, "It's been a quiet week..." We have made, and continue to make, our petitions to her creator...so now we wait. Meanwhile, Bettie is pretty much unchanged from last week's post.

It had been quite a while since we tried any flash card reading like we did when therapy was the order of the day. So yesterday and again today I asked her to tell me what the word was on each of about 20 flash cards the speech therapist had left with us. She used to get between 5 and 15 of them correct. Now her score is zero. It may be the pain medication making it even more difficult to find the right word, I don't know. Anyway, I don't think I'll be trying that anymore.

Speaking of pain, that is a real difficult thing to deal with when the patient cannot verbalize with any predictable accuracy, just what she's feeling. It's kind of a loose, loose situation: You either have pain with alertness or comfort with fuzziness. I'm choosing comfort for her, but there is less interaction as a result. We still have our close moments, but I'm glad I've told her all I really feel I need to. I'm not going to wish later that I had said something more. At least that is one good thing that this protracted decline has given us: time to say goodbye.

Another difficult thing to deal with is guilt...or if not guilt then something close to it. For example, after ending the previous paragraph with "goodbye" I'm wondering: "Have I given up on faith? How does that look to our many friends who are praying, and here I am saying goodbye?" Then there's the desire to have her suffering come to and end, but what does that really mean I'm desiring? That kind of stuff goes through my mind all the time. However, I'm sure these issues are very typical of all hospice caregivers, and that's some consolation.

Bettie has had a number of visitors the past week, and though often not verbally responsive, she seems to enjoy most of them. I say most, because some old and dear friends bring a tearful response from her. I'm not sure why, but it passes and the sun comes out again.

One final note: The other day we received a card from the Auburn Regional Medical Center, Acute Rehab Unit. It was signed by eighteen members of the staff there. Not just signed actually...they each wrote a brief note of love, support and prayer for Bettie. It seems she made quite an impression during the month of July in which she was a resident there. (See the 40 posts for the month of July, for more details.) The card quite undid both of us as I read it to her. Thank you guys so much. This trial is not the kind of thing you want to attempt alone, and we surely are not alone!

Since You Asked...

Here are some of the details that people have been asking about.

Bettie's Condition:

• She is still able to get up, and, with assistance (and her walker), make her way to the bathroom and back.
• Her communication is pretty much unchanged, that is, she seems to understand most or all of what is said to her and can usually make appropriate simple responses. She almost never expresses her desires or comments with the right words, so it is often a guessing game to determine her intent.
• She is in her own bed, other than bathroom visits, all the time. We can get a hospital bed from the hospice care people, but have not found the need to, so far. At this point, it seems doubtful she will be going anywhere else, even downstairs to the family room.
• Her pain is managed by a 3-day patch of Fentanyl, plus Oxycodone when needed. All her pain seems to be abdominal, in the area where the biopsy was performed two weeks ago.
• She has a diminishing appetite, but is able to eat something at each meal time. We try to give her what ever she might enjoy, often breaking her natural-and-organic-only rules, from before this happened. Her weight a week ago was 96.6 lbs, up slightly from a couple of weeks before. (Before the stroke, June 23rd, she was 123 lbs.)
• She sleeps well...maybe too well. Pain medication make one sleepy, so this it to be expected.
• She does pretty well with visitors. With hospice care people in several times a week, family, and friends, she has had a fair number of callers. She is able to engage everyone with at least a weak "Hi", though she may fall asleep at some point in a visit.
• Occasionally she will sit up a little so as to view a recent addition to our bedroom, a large plasma television. She can enjoy a movie or favorite show, sometimes even staying awake to the end. Most of the time it displays a continuous aquarium scene that is quite soothing, with soft background music.
• And, yes, she can still make funny faces...on occasion. I love that.

How am I doing:

• As mentioned earlier, this is a shocking change in my life. In the months after the stroke but before the diagnosis, there was time to seriously consider the things that could come next, but it was still traumatic to actually experience it. Nevertheless, this is not new ground I'm breaking here. This kind of thing happens to people all the time. I imagine all of you blog readers have had to deal with equally sad situations. I don't know...we just do it, don't we? All in all, I'm doing OK.
• Health wise, I just today finished all the followup visits after my two days in the hospital scare a month ago (see Oh No, Back in the Hospital). Apparently most of the stroke-like symptoms I exhibited came from some slight interference in my neck where a little arthritis has narrowed the clearance for the spinal cord. Heart is in great shape, and nothing much to be concerned with otherwise. Just don't play tackle football or run with scissors...that kind of stuff.

Am I still working, and singing:

• My employer, iShip Inc., as been particularily wonderful during this time. I am able to spend all the time I need and want with Bettie. I do still go into the office as I'm able and I can work from home for most of the things I do too. There is more detail about my work in the post from June 30th, titled And Now, a Word From Our Sponsor.
• Last Wednesday was the day we saw the oncologist. It did not seem appropriate to go singing that evening, though it was regular chorus rehersal night. Donny, our director, made a brief announcement to the chorus about my situation. This week, I'll return. Singing helps...so does the brotherly fellowship and support I get there.

Do I have enough help:

• I was telling the hospice nurse yesterday: "We're probably less in need of help that your average clients". Beside the live in family (My son Tim, Veronica, his wife, and Jordan and Jonny their teenage children) I now have my son Rick (a former CNA) as a full-time helper. Just last night, my son (and co-editor) Steve flew in from San Francisco for some time with "Mom". So we have a house full.
• And speaking of hospice home care, they really provide an amazing amount of help. Besides equipment of all kinds, they have nurses, massage therapists, bathing assistance, housekeeping help, spiritual counseling, and more. Next time they are here, I'll ask about leaf raking. (I call this place "Five Oaks" for a reason.) Oh, never mind, that's Jonny's job.

Can you visit:

• Yes, you can. At a minimum, call a hour or so ahead of time...a day before might be even better. (253 854-5725). Even with that, it is possible you may have to wait downstairs for a hospice care person to finish a visit.

Where Else but America?

While I've traveled the world a fair amount and visited other cultures, I have only lived in America. Therefore, my opinion is decidedly non-objective...but for my money, this is the place to endure a trial, if that is what fate brings you. I am so blessed to live among the most generous, loving, and supportive people on the planet. Where do I start, to acknowledge the overflow that has engulfed me?

• The pastor where I attend services each week called the other day. What's so special about that? He either stayed up very late at night or got up in the wee hours to do it...he's in Israel, leading a tour. That was very special.
• Speaking of churches, people from where we used to go, call, send cards, visit and bring food by.
• Not to be out done, a woman in our congregation had a florist deliver a bouquet to Bettie on Sabbath...just to make the day special. That was her third or fourth flower arrangement since August.
• My daughter Kim came down from Arlington yesterday, especially to give "Mom" a loving pedicure. She stayed today and is now giving her a manicure.
• The Hospice care team from St. Joseph hospital (Tacoma) have begun coming and are providing a basket full of services. Practically anything we need in the way of equipment, supplies, or services, they provide. And they do it with dignity and class, really.
• My brothers in Northwest Sound Men's Chorus are supporting me like you wouldn't believe. Just today I got a long, wonderful note from one of them. It said in part: "...I wish you the strength to get through these times as best you are able. I have read the recent posts on your blog. Thank you for sharing that with so many. It has helped more people than you can imagine. It’s not just been an exercise to help you get through this or to inform your close friends. It has been a ministry and I respect you so much for sharing in times like these. I am praying for you and your family. I hope you will come to chorus when you are ready and give us a chance to show you our love and support. We all love you, Dick."
• My younger brother (Grandpa Jim) and my niece (Linda) came by Saturday afternoon and had a long and supportive visit.
• Our primary care doctor (Dr. Schumer) will be making a house call this week. What kind of doctor does that anymore?
• Read the comments that have been made to recent posts and you'll see more of what I'm getting.

I could go on and on, but you get the idea. Our great country is founded on a value system that makes people like these. People that rush to aid the imperiled, bind up the wounded, and comfort the suffering. We should thank God for these values, they make us all better...and when needed, they heal us.

On Saying 'Goodbye' 2

If you have been following this blog for some time, you may remember the post from August 27th titled "On Saying 'Goodbye' ". All of what I said there applies today...except this time, I am so very sorry to say, it is becoming a reality.

We had our visit with the oncologist this morning and he gave a long name to the type of lymphoma Bettie has. I don't remember the name...just the prognosis: "She has weeks. She is already in late stage 3 (of 4 stages) of a very aggresive type," Dr. Keech told us. "We'll make her comfortable and get hospice care to give you a hand."

It was the same feeling I had on Friday when Dr. Stephan sort of pre-conditioned me to this possibility with the news that it was lymphoma, but of unknown (at the time) type. Pre-conditioned or not, it is still a feeling like no other.

I've told our children. Dr. Keech gave Bettie the news. "This is what I'm paid for", he told me, so I let him go ahead. She took it calmly. I'm not sure she fully 'got it' at the time. But we've talked since, and we're both OK.

As I was bringing Bettie into the house, at noon, I was thinking "this may be the last time she ever rides in the car, the last time up the steps", etc., etc. I quickly realized that I could drive myself nuts with the sad thoughts. There's just no point in that. So, if you see me or talk to me, I'm not going to be someone you have to tiptoe around. I know I'm supported. Just treat me normal, and I'll try to be upbeat. After all, I've had 50 years with Bettie. Hard to top that!

Results of the Biopsy 2

In my over-long post about singing, I mentioned that we will see the doctor on Monday. That was yesterday and we did see the doctor. It was a fairly routine trip to Dr. Schumer, our primary care doctor to have Bettie's weekly blood consistency test. (Being on a blood thinner requires close monitoring to keep it not too thin and not too thick, to put it in non-medical terms.)

Doctor Schumer did spend some time with me (alone) discussing where we go from here but he did not go into the specifics of Bettie's condition. That is not his specialty. He referred us to an oncologist and said they would call me later in the day to set an appointment, probably Tuesday.

When I talked later with Dr. Keech's office, we settled on Wednesday morning. So that's when I'll have some real news.

Singing with a Heavy Heart

First, a little background:

I've been a member of the Barbershop
Harmony Society for 13 years or so (from 1980 to 84 in Tacoma and from 2000 to the present in Bellevue). Barbershop harmony is a uniquely American art form...that is, it originated in the American south over a hundred years ago. Now it is international both in participants and those who simply enjoy the sound of close, four-part harmony.

I place a rather high value on my participation, in the belief that music makes our society a better place...besides, it is good clean fun, fellowship, and, when one needs it, a source of tremendous emotional support. In all these ways, it is truly a ministry.

My chorus, Northwest Sound Men's Chorus, produces two annual shows for the general public: a spring/summer show in early June, and a Holiday show in December. These help us pay the rent, our director, coaches, and other expenses that our dues don't cover. In addition to these shows, you might find us performing at local community events such as: The City of Kirkland's tree lighting ceremony, the Seattle Westlake Center holiday kick off, the Bellevue Strawberry Festival, Music in the Park in Everett, and many others.

And then, there is something else...COMPETITION! Chapters in the Barbershop Harmony Society can choose to compete among themselves for titles such as Division Champion, District Champion, and International Champion. (There are contests for both quartets and choruses.)

There is no money in this, but you would never guess it given the amount of work the members put in just to sing better than the other guys. The nice thing about the competitive part is that it raises the standards for everyone...we all get better.

If you would like to get an idea of just how good this music genre can get, here is a link to the St Charles Missouri chapter, the Ambassadors of Harmony and their performance of "76 Trombones" which won the international championship this past July. In that same competition, Northwest Sound placed 19th, highest of any chorus in our district.

Speaking of "district" we belong to the Evergreen District which is very large: Alaska, British Columbia, Alberta, Washington, Oregon, Idaho, and Western Montana. And this weekend was the annual Evergreen District Competition. In was Vancouver's turn to host it and they choose the convention center in Whistler, B.C. as the venue. Our chorus was in the competition, trying to earn the right to again represent our district at the international competition next year in Philadelphia.

So that's how I happened to be on a charter bus, 50 miles or so north of Vancouver at 2:00 Friday afternoon when I received a cell phone call from Dr. Stephan. I had given him my cell number and knew that he might call, but I really expected the call on Monday. When it came, this call was very like the call I made to Bettie the morning of the stroke (see The Day it Happened)...one of those moments I know can happen but I never really expected that it would ... at least not to me.

At first the doctor's voice sounded positive, that is he was direct, no grasping to try to find sugar coated words: "We have the results from Bettie's biopsy (a slight pause here) it is Lymphoma." If you put two words on a balance scale (like the scales of justice): "Stroke" on one side and "Lymphoma" on the other, the L word is clearly heaver. While it's true there are stroke victims who die and Lymphoma victims who fully recover, it is more often the other way around. Unfortunately for Bettie, she has both, plus she is down to 95 pounds or so, a grim picture indeed.

I thanked Dr. Stephan, though in hindsight I'm not sure why ... good manners I guess. My head was spinning. I wanted to stand up and shout "Stop the bus, I want to go home". I'm thinking: "What kind of man goes off to sing while his wife is..." But I took some time to think it through:

• The trip was already planned and the risks were considered and allowed for.
• She is in very good care with family.
• There is nothing I could do, even if I were there, until Monday when we see the doctor.
• I really do need a break from the daily stress of this, and singing is a very good stress reliever.
• In last place, but still a real consideration, is my commitment to the chorus.

So I finally made peace with myself, though I determined that I would high-tail it for home as soon as the contest was over, rather than waiting for the return charter bus on Sunday. Next, I called my daughter Kim and we cried in each others ears as I shared the news.

Seated next to me on the bus was a good buddy from the chorus, Ed Dierdorf. Naturally, he had heard me on the phone so I owed at least him an explanation. I asked him not to tell anyone, and said that I was not sure exactly what to do. He and I talked about it at some length. I knew that if I spread the news, I would be flooded with a big warm blanked of brotherly support. But...

The issue here is this: When chorus members prepare to perform (and this is especially true when the performance includes a tender love ballad, as our upcoming performance did) the emotional preparation is very important. Each guy goes to his own emotional space in preparation to deliver something from his own heart. Something that will move the audience, (and hopefully the judges too). In a tight brotherhood like Northwest Sound, when one member hurts, it affects the whole unit. So I thought there was a very real possibility that my issue could mess with the emotional preperation of the whole chorus and I didn't want to do that. Of course, on the other hand, maybe it would actually add some emotional depth, what do I know?

I thought for a long time about what to do, and who to tell, if anyone. I told Ed: "I think I'll just tell Donny" (Don Rose, our fabulous director). "He'll know whether or not to tell the others." I thought some more: "What if it messes with his preparation?" I finally decided to tell Don's wife Amy: "She'll know whether or not it would be good to tell Donny." So that's how I left it for the rest of the trip. The Roses were not on the bus so I would have to wait until much later to find and talk to Amy.

When I checked-in and got to my hotel room, I found that for a $12 fee I could get on the Internet. So I did, and soon found my way to this blog. However, try as I might, I could not edit the blog and let all of you, my faithful "Bettie Followers" in on the news. "Twelve bucks wasted" I thought.

That's when I thought of calling Steve, my son and co-editor of this blog. Of course he had heard from his sister Kim, so he knew what was going down. I asked him to put up a post (which he did later that evening Results of the Biopsy). To help him with what he might say, I talked to him at length, just so he'd get a feel for where I was with everything.

One of the things I discussed was the issue of telling the chorus. His counsel was: "Don't tell anyone. You'd only put Amy in an impossible position by having to keep a secret from her husband if she determined that Donny should not be told. That wouldn't be good, of course". (How did I raise such wise kids?) So that's what I did...er, didn't actually.

We rehearsed later that evening and again beginning at 6:00 the next morning in prep for our 10:15 a.m. stage time. Our performance was wonderful. At least we thought we were pretty good. (We placed third out of nineteen choruses.) I don't remember what I thought about during the ballad, but it wasn't Bettie. I could not have sung a note with her pretty face in my head. Sorry Honey.

After our performance I told Donny: "I have to leave now, I can't be here for the show tonight." (The top three choruses perform at the evening show). He asked me if Bettie was alright and all I could tell him was to check with Chuck Caplan, a medical doctor and a gifted baritone who sings with us. I had just told Dr. Caplan all the details that I knew and I thought he could provide the best description of the issue to anyone who asked. Besides, I can't tell anyone what is going on and keep my composure -- not yet anyway -- and I didn't have the time to tell everyone before I was to leave.

I caught the Greyhound bus at 1:30. So now I'm sitting in the Vancouver bus/train depot, with a tablet and pen, whiling away a two-hour layover before the Seattle bus leaves. I'll transcribe and post this, probably tomorrow (Sunday, Nov 1) morning.

I finally reached my sweetie's side about 11:15 p.m. She was sleeping peacefully but awakened to give me a weak smile. Monday we'll see Dr. Schumer and determine where we go from here.

But for now, this is where I need to be.