The Next to the Last Chapter

I fear I may have given an overly optimistic impression in my post of a week ago (Call it a Chanukkah Blessing). If so, I apologize. While what I said was true...Bettie was better. Perhaps I should have made it perfectly clear that she was only better than the previous week, not better as in all better, or in remission, or what ever other term one might use to explain a dramatic improvement.

Given the oncologists prognosis: "she has weeks" which was given just over six weeks ago, the "better" signs we saw last week did seem encouraging. After all, she was supposed to be...well, you know. In fact, in a phone conversation with the hospice nurse yesterday, she told me that Bettie would have died weeks ago, had it not been for the excellent care, love, and support she is getting here at home with family. She had especially high praise for our son Rick, who simply cannot do too much in his care of "Mom".

But the primary purpose of the nurse's call, was not about Bettie but about me. She wanted to make sure I understood how things were. I told her that I realized what is happening and that, baring a miracle, I expect Bettie probably won't make it through January. "That would be really good...if she could make it to January second or third" she said. "But I think that is pretty optimistic". That's when she told me that, but for the loving home care, she would not have made it this far.

As you can imagine, it was another one of those moments you don't forget, like The Day it Happened, or the call on the bus, or the oncologists prognosis. Maybe I have been in denial, at least about how much time we have, if not about the ultimate end. Well, as I said last week: "Unable to see the future as we are, we just take each day..." Since this is my first time at this, I"m in no position to judge the accuracy of the nurse's opinion. However, prudence suggests some more detailed planning is in order.

And so, dear readers, we seem to be approaching the end of Bettie's Challenge. How I wish it wasn't so. I suppose I could go back to daily or even twice daily posts, as I did in the beginning. I could describe each step down into this valley..but there is no honor nor dignity in that. Baring something dramatic, the next post will be titled: "The Last Chapter", and you know what that will say. It will have a version number after the title. I will update that post with details, as I know them, that those of you wishing to honor Bettie at a memorial service will need.

I'm doing OK. Bettie and I are surrounded and supported by loving family and friends...and that's just the support we can see...there's more. Thank you all for taking a moment here and there out of your busy lives to catch up on Bettie's latest status here. You have been doing that for these nearly six months and it means an awful lot to know that you are there...really.

Call it a Chanukkah Blessing

Yesterday evening, Dr. Schumer (who is Jewish) made a house call here, on his way home, presumably, to celebrate Chanukkah. Answering the door, I greeted him and he responded with "How's Bettie?".

"Better," I said..."the last few days she seems to be better".

In the bedroom, he found Bettie in bed, but fully dressed. (Earlier we had her up, sitting in a chair and later had carried her downstairs to be with the family. She was still dressed from that adventure.) I told the doctor that the last couple of weeks (primarily at the instigation of our son Rick who I've hired to be her primary care-giver because he worked for several years as a nursing assistant at UW Medical Center) we have taken a different approach to her activity level. This is what Rick had said to me in a message about two and a half weeks ago:

"I have A LOT of experience with people in Mom's condition. Older ones ALWAYS wanted to sleep ALL the time, but we always got them up during the day. Just like with them, she moans, groans and makes grimacing faces with every exertion, and then for a little while longer, but then is OK. (Just like when we go running, work out & lift weights, it hurts and we made ugly faces & moan.) In the same way, getting Mom up for exercise is definitely good for many reasons, one of which is it reduces the requirement for the very unhealthy pain medication. Visit any hospital or care facility. You'll see that they try to get patients out of bed for part of every day.

"Among the reasons for getting her up, going outside, staying awake a good amount, and trying to walk as much as possible during the day, are: it helps her mind, her appetite, helps stabilize her muscles and reduce discomfort and pain, diminish her restlessness, and helps her to relax, rest, and sleep much better at night."

The doctor took one look and said: "She is better. Healing happens," he says "and it's almost never what doctors do. But I see it occasionally. Not often...but it happens." I told him that it had been over a week since we gave her any Oxycodone for pain and that her 3-day pain patch was two days past due and she didn't seem to need it. Dr. Schumer said he would tell the hospice people that she could be off her pain meds. "You'll have to cut them some slack here", he said "they have this expectation of how things should go...and this is not something they would expect to see."

Bettie smiled at him and said a little something, though we're not sure what it was, I imagine it was something like: "Hey Doc, check me out."

The doctor's calls are primarily a much-appreciated professional courtesy. He doesn't have to do this and I haven't seen a bill. He just sees it as the right thing to do...and he gladly does it. He left with a cheery "Happy Chanukkah", promising to bring Bettie a dreidel on his next visit in two weeks.

It was the doctor who used the word "healing". If this is healing in the miraculous sense, then it is the "from that very hour" (Matt 15:28) variety, as opposed to the more dramatic "take up thy bed, and walk" (John 5:8) example.

What ever it is, Bettie is:

• Awake more each day;
• Not taking pain medication;
• Eating better (though chewing is a major issue, so we puree her food);
• Sleeping better;
• Attempting to talk more, though still unable to find the correct words;
• And just generally perkier than she was two weeks ago.

Unable to see the future as we are, we just take each day and are thankful for whatever blessings we receive. Thank you to Rick and to Dr. Schumer. Happy Chanukkah indeed.

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.

Results of the Biopsy

I'm writing this post today because Dick is unable to while he is traveling.
-- Steve Aitkins

It's Friday and Dr. Stephan called Dad today with the results of the biopsy. Dad got the call when he was on his way to Canada for the chorus competition. Luckily he wasn't driving.

The biopsy tests showed Mom has Lymphoma.

So there it is in black and white. I don't like writing nor reading those words.

For me, now several hours later, it's a lot heavier to read those words than it was to hear them when my sister Kim called me to relay the news between choking back her tears late this afternoon, "Are you sitting down? ..."

I guess I didn't really know what to think of that verdict. Is it a death sentence? Does it mean more pain to come? Or would Mom soon be out of the pain that she's been in for the last few months after coming home from the hospital?

There are several different types of Lymphoma; with some types a person can live for many years; others are more aggressive and even a strong person doesn't stand a chance. Mom's body has weakened considerably. She's lost a lot of weight because of her pain lately and from not consuming enough calories. So quite honestly we don't know if she is good condition -- at 95 pounds -- to fight this thing that has already began its harsh effects on her body. We love her and we certainly do not want to lose her, but we do not like seeing her in constant pain.

She is a fighter though and we proudly watched her rally with everything she had to fight back in the first weeks after her stroke. So she could have few rounds of fight in her.

Between you and me, I just gotta wonder: with all the exams and tests and all the time with several different doctors, and in and out of the hospital after complaints of localized pain, why didn't any of the doctors catch this earlier? How many doctors confuse the affects of Lymphoma with Depression? All Mom's doctors and nurses were outstanding and some of the nicest and most professional people I've ever met. I'm sorry but with that said, I just gotta wonder how this was mis-diagnosed or just plain missed for so long.

I've seen Dad play this whole scenario through many times, thinking out loud, "What if ..." And I know he's discussed the worst possible outcomes with Mom. But it's one thing to talk about it hypothetically and another to face reality. Because after all, those things happen to other people but not your wife, your mom, your sister or another loved one. Right?

Apparently not.

Dad said to me tonight, on the phone from Vancouver, Canada, "When this happens to you there's nothing else like it. You can't know how it feels until it happens to you."

I know what he means.

For me, I was caught off guard a second time today and unsure how to react or feel just yet. I mean I did feel horrible, that we were closer to losing my Mom. But no. It can't be.

I know when Veronica, my sister-in-law, called me on the morning of June 23rd and told me that Mom was taken to the hospital after an apparent stroke, I thought, "Apparent stroke. But not a real stroke. No. This doesn't happen to my Mom. She'll be OK. She'll be home in a few hours and joking about this whole episode."

I was just up in Seattle after all (I live in San Francisco, a two-hour plane ride away) just five weeks earlier for my parents' 50th anniversary celebration and she seemed fine ... well she was looking a little weak and not altogether herself. But she can't have a stroke. She's my mom.

And now I'm supposed to believe she can't speak or move her legs? No. Come on."

No. This happens to other people.

Finally it started to settle in and become real after several more status calls from her hospital south of Seattle.

"Wow. I guess it is real," I thought to myself. "I better get to Seattle before her condition gets any worse." But even then I thought I was in control while making preparations, packing, making flight reservations. But when I called my girlfriend Christine to ask her if she could take me to the airport I choked on those words, "My mom's had a stroke." And I had to try three times to get them out.

These things happen to other people until they happen to you.

And they do. Believe me.

Tonight I was reminding Christine to tell her mom (and dad) the things she really wants to share with them NOW; say the things that she really feels about her own mom before it's too late.

OK, next steps:
Dad is rushing back from Canada in the morning to be with mom and the rest of the family. He'll tell Mom about the cancer when he gets back, assuming she has not read it on everyone's faces by then already.

On Monday morning Mom and Dad go back to Dr. Schumer to get more specifics on the biopsy and hopefully find out exactly what type and the severity of the Lymphoma mom has been dealing with and how to move forward.

More next steps:
As Dad suggested in his post titled "On Saying Goodbye" ... excuse me for the sappiness of this, but it is sincere: May I also suggest you to tell someone close to you that you love them today, and maybe a couple reasons why.

I love my mom ... for reasons too numerous to list here.

Half an Answer

It's been a busy couple of days since Monday's post. Here is a copy of what the plan was, and the results we now know (in italics):

• Today (that was Monday) Dr. Stephan sent us across the street to the Auburn Medical Center lab for some blood work. That will give him another gauge on the gall bladder issue. That lab work turned out nearly normal so at that point the gall bladder was beginning to look like it was not the issue.


• Tomorrow (that was Tuesday), again at Auburn Med, Bettie will have a HIDA scan of the gall bladder which will test its functionality. If this test proves normal, that will pretty much end that organ as a suspect in the pain mystery. If it is not normal, the bladder will be removed, probably within a week. For nearly two agonizing hours, Bettie lay on a hard table, under a camera the size of a Buick, while it took pictures of radio-active stuff trying to make its way into her gall bladder. (Not exactly the same procedure description you'll find in the medical texts.) Anyway, the HIDA scan revealed that the gall bladder is actually NOT working properly. Bettie will probably have gall bladder surgery late next week.


• Wednesday (today, at 7 a.m.) Bettie will go into surgery for a biopsy of the largest of the aforementioned knots in her tummy. This will give us an indication of just how serious an issue we are dealing with in the lymph nodes. Baring complications, she'll be home again that day. The biopsy procedure went as planned with no complications. We arrived at 7 a.m.; she went into the operation room with the "green suits" at 9 a.m.; Dr. Stephan came and gave me an update at 10 a.m.; I got to go sit with her in recovery at 11 a.m. and we left for home about noon.

So now she is back in her own bed, having just had a pretty good lunch (she had not eaten since yesterday dinner due to the procedure). She has pain pills to last the weekend and we settle down to await the results of the biopsy...the other half of the answer.

Doctor does not expect results until Friday or maybe even Monday. I had told him that I have an out-of-town event this week-end but I'll cancel at the drop of a hat if you say so. "Oh no" he says "Go ahead with your plans. If I need to I can reach you by cell phone. We won't be doing anything that soon anyway. You need the break." Since I have lots of live-in help, I sort of reluctantly have decided to go ahead with plans to sing with my chorus in a big "District Chorus Contest" in Whistler B.C. (Hope my cell doesn't ring while were on stage...I'd probably answer it!)

Of course I'll post the biopsy results as soon as I can, but that may not be until Monday. Remember that good things can come from all of this, whatever the outcome. Meanwhile, I'm still whistling.

Hold On With That Scalpel

In last Monday's posts I was sort of celebrating the news that Bettie was going to have surgery. It turns out the party was premature...well...sort of. She is going to have surgery, and soon...Wednesday, the 28th. But it won't be the gall bladder...at least not just yet. There is something more pressing, and possibly more serious.

Here's the story: Dr. Schumer, our primary care guy has referred the results of the most recent gall bladder scan to our old friend Dr. Stephan. (You may remember him from the posts on August 25th and 27th). He is not so sure that the gall bladder is actually the issue after all. That scan was, while not pristine, actually pretty close to normal. Not what you'd expect to see for the level of pain Bettie is suffering.

Meanwhile, a couple of other issues have come to the surface. When comparing images from the last couple of months, there is a noticeable increase in the size of several of her lymph nodes. In addition, a couple of suspicious knots have developed, close to the surface of her lower right abdomen. When I first noticed them about two weeks ago and pointed them out to the doctor, they were almond size. Now they are walnut size. Dr. Stephen does not want to remove the gall bladder, only to later discover that it was actually something else. So Here's the plan:

• Today Dr. Stephan sent us across the street to the Auburn Medical Center lab for some blood work. That will give him another gauge on the gall bladder issue.
• Tomorrow, again at Auburn Med, Bettie will have a HIDA scan of the gall bladder which will test its functionality. If this test proves normal, that will pretty much end that organ as a suspect in the pain mystery. If it is not normal, the bladder will be removed, probably within a week.
• Wednesday Bettie will go into surgery for a biopsy of the largest of the aforementioned knots in her tummy. This will give us an indication of just how serious an issue we are dealing with in the lymph nodes. Baring complications, she'll be home again that day.

While I like to keep this blog as upbeat (sometimes, I'm told, even funny) as possible, we all have to realize what could be going on here...and where it could ultimately end. So for now, it is very day to day. I'll know, and post, more tomorrow. The biopsy results however will probably not be known until Friday at the earliest and maybe not until Monday. In even the worst case however, nothing will be done the rest of this week. That is, the doctor does not foresee any condition that would require emergency action.

So I'll try to continue with the upbeat stuff, but just between you and me, I'm whistling in the dark here.

News! At Last Some News

As previously related, Bettie has been having right side abdominal pain, pretty much from mid-July when they discovered an issue with her gall bladder. In the last couple of weeks it has gotten much worse...to the point where she is only up to move to the bath or down stairs from our bedroom to the wheelchair, where she can be taken to the couch in the family room. Her appetite has deteriorated and she has lost at least four pounds...down now to 98!

Needless to say, this has been a great concern to the family and to her professional treatment staff. Both doctors Schumer (our primary-care guy) and Heide (her "stroke doctor"...actually a neurologist) have provided input. One of their suggestions was a new ultra-sound exam of the gall bladder, which was performed last Friday morning.

Today, Dr. Schumer got the results of that scan and called us with the news: "I'm referring Bettie to Dr. Pettie on Friday...she needs to have her gall bladder removed." I was out when the call came so I didn't speak with Dr. Schumer, but the bottom line is she will have the surgery within the next couple of weeks.

Now it will seem kind of odd to you, for us to be celebrating the need for surgery. This is not the kind of thing one usually looks forward to...kind of in the category of rejoicing over an upcoming root canal...like, who does that? However, if you were here with us, watching her decline these last couple of weeks, you would understand. When Rick told me the news from Dr. Schumer, my heart leaped in relief...almost joy. At last, they have found something. Yes!

Though it is often hard to read Bettie's responses, I think I detected some relief on her part too, when I told her about it.

Being a person of faith, I do not consider the gall bladder a vestigial (look it up) remain from a previous branch of the human tree. Nevertheless, its designed role can be omitted with little effect on one's lifestyle. It this case, I readily accept (for her, as I have durable power of attorney) a life free of both gall bladder and related pain, as opposed to continuing with both.

Modern surgical practice allows this type of surgery to be minimally invasive, which is fortunate, given how weak and frail she is right now. (On that note, I think we have arrested the weight loss and she is eating somewhat better the last couple of days.)

But there is a good thing that will come from this extra trial of pain, coming, as it has, on top of stroke. When Bettie is free of pain, the stroke will seem to me like a relatively minor nuisance in our life together. I predict that she'll walk with little impairment, get better and better at talking, and regain some useful functionality with her right hand. She might even feel like...well who knows. But she'll be back and that is news, at last some news.

Is the Worst Behind Us?

Gee, I hope so.

As you have noted, there have not been many posts to this blog recently. That's because I like to report progress toward recovery...and there has been precious little of it lately. But maybe we are turning a corner just now. By that I mean today...this afternoon!

To recap recent history, since Bettie came home from the hospital on the 30th of July, she has been frequently complaining of pain in the right side of her abdomen. At first we naturally (and probably correctly) attributed it to the drain tube that had been inserted into her gall bladder and which remained with her for another few weeks. When that was removed (see Maybe We'll Glow in the Dark) we thought that would be the end of the pain. It wasn't.

Next we discovered a badly deteriorated right hip joint. We arranged to have an injection of Depo Medrol in the hip to relieve the pain temporarily. It didn't.

Finally, just a week ago today we concluded that she had a bowel blockage. We had just selected a new primary care doctor (Dr. David Schumer) and he had an x-ray made that confirmed her bowel was full, but not necessarily blocked. Four days of Miralax solved that problem...but the pain persisted.

So today I took her back to Dr. Schumer to see if we could determine what we might be missing. Dr. Schumer is just the kind of guy I hoped we would find. (We found him simply by calling a physician referral service in Auburn.) He describes himself as a "former hippie" so you can imagine he is somewhat laid back. He has a wonderful way of making you feel like everything will be OK. He comes in the examining room, sits down, puts his feet up and chats with us as if we are the only important case he has and the rest of his day is ours. We like him.

His take on Bettie's current condition is basically post stroke depression. He says he sees it all the time. He reassures me that it will pass and gives me some tips and adjusts some medication and adds a new one to help with it. "I'll see you early next week...we'll get through this" he assures me. We leave and I feel better...Bettie, not so much.

Reassured that we're doing the right things, it is a little easier to help Bettie through this. For one thing, my son Rick (who I recently hired to be semi-full-time caregiver, partly because he is a former certified nursing assistant) has helped me soften my overall dealings with Bettie. I was getting a little bossy with her, he pointed out, whereas she needs tender right now...lots of TLC. I think it is working. Maybe it's just me, but it seems like she's feeling some better this afternoon. I got her to make some funny faces at me...that's always a good sign.

Meanwhile, the issues that put me in the ER last week seem to be past and I'm following a new regime on doctors orders...weight coming down, neck pain decreasing, and other good stuff. All in all, I'm hopeful that we've left the worst behind us and are ready to make some progress.

Oh No, Back in the Hospital

These strokes are capricious things...they sneak up on you, often without warning. On the other hand, sometimes there is ample warning...and that's what happened this time.

For the last several weeks, there have been warning signs that another stroke is possibly looming in the future:

• A couple of episodes of double vision.
• About five episodes of numbness of the left arm from shoulder to finger tips, lasting a minute or two.
• A persistent headache just behind the right eye, sometimes lasting for more than a day at a time.
• On Sunday a large island of numbness in the right side of the face.

During a visit with Bettie's nutrition counselor on Tuesday, these symptoms were all discussed and he said it was time to see just what was going on...NOW. So off to the emergency room once again, this time at Valley Medical Center. We choose VMC for a couple of reasons:

1. They are a little better equipped for this kind of stuff than Auburn.
2. They have all my medical records.

That's right, MY records. You didn't think this was about Bettie did you? She's coming along OK, this time it is my issue.

Being male and basically invincible, I've been noticing the issues mentioned above and, because none of them (except the headache) last for more than a minute or so, pretty much ignoring them. But when the facial numbness occurred on Sunday, I realized that this could be pretty serious. Since I was scheduled for a visit with Bettie's nutrition coach on Tuesday for my own issues, I mentioned everything to him.

So here I am, blogging from a hospital bed at VMC while they poke, prod, scan, and otherwise make like doctors. I had to stay the night Tuesday and may have to Wednesday as well, simply because of the number of tests they want to do.

Meanwhile, Bettie is being cared for by our son Rick.

It is nice that I have access to the web from bed here, but it is very difficult logistically. The monitor is across the room and the controls to type and edit are unfamiliar. I'll post this now, and then edit it tomorrow when I get home, assuming nothing serious is found that precludes it. (Talk about serious...a few minutes ago the nurse came in and said I had flat-lined...she quickly discovered that one of my heart monitor cords had unplugged. Whew, that was close.)

__________ Update __________

I did, in fact stay both Tuesday and Wednesday nights and had a good going over. I had my head in a scanner three different times...you'd think they could find something in there with all of that, wouldn't you. Also had blood work and a echo analysis of my heart for half an hour. I'll revisit some of the specialists soon to get the fine details. But for the most part, everything checked OK. I need to be taking asprin every day as a cheap, effective blood thinner, and of course, no more having secret issues that I keep to myself. It turns out that I am not invincible...imagine that.

The Results Are...Underwhelming

At least so far, there does not seem to be a great deal of difference between Bettie's pain with walking today, versus yesterday and before. On the other hand, this is just about the time the doctor at Auburn Diagnostic Imaging (where she had the shot of Depo-Medrol on Tuesday) said the effects of the injection would begin to show...if they are positive.

For the first time in a couple of weeks, a home care therapist (Renee Morgan, physical therapy) came to work with Bettie. As usual, these people see improvements that the family misses, being so close daily. That is encouraging in itself.

Other than an afternoon trip to Costco for another "driving" excursion up and down the aisles, an uneventful day. This time we didn't run into any old friends...or anyone else for that matter.

Bettie Has Been Shot!

Right on (the revised) schedule, Bettie has had an imaging-directed injection of Depo-Medrol in the right hip ball joint. (Our hope here is to give Bettie a few months of pain relief while she gains enough strength to cope with a future hip replacement.) I had thought that she was going to get something to lubricate the bone-on-bone condition there, but that's not what this stuff does. It turns out to be a pretty effective anti-inflammatory drug...most of the time.

Like the investment caveat "Past performance is not a guarantee of future results", so it is with this treatment. The doctor who did it says its effectiveness can be from no pain relief at all, to complete pain relief for many months. Most patients have good outcomes, and the injection can be repeated up to three times. But for now, it is wait and see.

An anaesthetic was injected first and that will wear off later today. When it does, we should not expect any improvement today, as the Depo-Medrol takes 24 to 48 hours to begin its magic. Thursday...that's when we hope to see her resurrection, so to speak. Hopefully I'll have a good report on how things look Thursday evening.

Don't Ask, Don't Tell

For going on three months now, we've had a closer relationship with the medical community than anyone should ever want. However, it has been generally as positive and professional as one could hope for. But I suppose it is inevitable that an occasional bump in the road should occur...and one did on Monday.

That was the day Bettie was to have an injection in her hip to relieve arthritic pain, and hopefully free her up to make more progress toward normal walking. When we arrived at the imaging clinic to check in, I mentioned in passing, that Bettie was on a blood thinner (Coumadin), just in case that was an issue. It turns out to be a big issue, and they can't do the injection until she has been off the thinner for at least four days.

This was my third contact with the clinic, the previous two being by phone, confirming the appointment, etc. In neither of those calls did they ask about her medications, nor did I think it important to tell them. In addition, the appointment was set up by a referral from another doctor's office and that office didn't tell (although they knew), nor did the imaging clinic ask. Maybe I'm just making excuses for myself, but it seems like if there is a restriction on a clinical procedure to be performed, the performing clinic should ask if that restricting condition exists, at the time the appointment is first set.

The result of this lapse is a reschedule of the appointment for next Tuesday, eight days later than it would have been. Eight days of additional pain...all because no body asked, and nobody told.

If it Isn't One Thing...

Right... it's something else. And the something else turns out to be arthritis.

A couple of weeks ago Bettie had a follow-up visit with Dr. Sultana, the director of the Acute Rehab Center at Auburn Regional Medical Center. While going through the standard stuff: "What is your name...show me two fingers...point to your nose" etc., he asked her to take a few steps. He noted that she had a slight limp, which the rest of us just thought was stroke related. "I want that right hip x-rayed" he said, "There's something going on there".

He was correct. The subsequent x-ray shows that she has moderate to severe degradation in the right hip joint and is a prime candidate for a hip replacement...but not in her present condition. She needs to be stronger and just generally more stable, medically speaking.

So it appears that the pain in the right side resulting from the gall bladder drain tube has indeed been subsiding, but the pain from bone-on-bone contact in her hip has been increasing. Because of her inability to be very specific about just what hurts, it was easy for those of us close to her to assume the right side pain was a continuation of the drain issue. In fact, it now appears to be mostly, or maybe even entirely, hip pain. It always hurts when she walks, and always stops when she lies down. In hindsight, it is not so hard to diagnose.

So, what to do? Here's the plan: Monday she will have an imaging-directed shot of Cortizone (or something like it) injected directly where it will (hopefully) do the most good. This should give her two weeks to a month of freedom from pain. The shot can be repeated a limited number of times. This buys time for her to gain strength and weight so that we can seriously consider hip replacement.

Though there is still pain in her life, and it is still limiting how much progress she can make with some of the physical things like walking, it is a relief that the issue isn't some mysterious internal problem with the gall bladder, gizzard, or whatever, in her insides.

Since she can't get on the treadmill just yet, I asked my son Tim to move the weight bench into our master bedroom so she can start working on strength training. She realizes the need for "getting in shape" and is taking to it very well. She can do leg lifts without hip pain. She's up to thirty pounds, and climbing. And that's not all.

Bettie is driving again!

Yesterday, for the second time in the last week or so, we made a trip to the Fred Meyer store in Covington. For the convenience of handicapped customers, they have drivable electric grocery carts. She got one one, and off she went. The only thing she found difficult was getting off when it was time to leave. When we finished at Fred Meyer, we went (practically next door) to Costco. There she quickly mastered the Costco cart, which naturally had a much bigger basket.

Having these electric carts for free use by customers is a great boon to caregivers like me. It is a big help in my new role as the primary grocery shopper, because she knows where everything is, what brands, and sizes we use, etc. It is good for her to get out and do something meaningful and fun. It also gives her an informal opportunity to get comfortable interacting with people.

And to prove this last point, in both stores we ran into people we knew. Ah, let me change that...we bumped into...no, no,...we saw, people we knew. That's better. Anyway, in Fred Meyer, it was Dora Darby, the woman I sat next to in church last week. In Costco, it was Bobbie and Chuck Stocton, old friends from the church we attended previously. Both interactions were warm and supportive...just what she needs.

Simple Pleasures

We are still dealing with some pain in Bettie's right side, though it is somewhat intermittent. It seems to be aggravated by movement, and is often better or gone in the afternoons. It is, however, greatly slowing her progress in most areas.

This week we visited the nutritionist, Raven, at Dr. Heide's Clinic and she gave us some good tips for altering Bettie's diet to minimize the work the gall bladder has to do, just in case that is causing some of the pain. We also had a couple of trips to the anti-coagulation clinic at Valley Hospital to monitor Bettie's coumadin level, to hopefully thin her blood enough to prevent future strokes.

Otherwise, we take things day to day. When she is feeling good, Bettie is lots of fun and we work together very well. Sure, being a caregiver is lots of work, but so is being a stroke victim. But it isn't all negative and we simply try not to dwell on the parts that are. From the beginning, I've leveled with Bettie about what happened: "I know this isn't what we wanted to happen, but it did, you had a stroke. You can't talk very well, and stuff is hard. But I'm here and we'll get through this together. The family is here and we all love and support you."

So she knows what the score is, and is not fighting it. There are lots of frustrating times, but overall, she has a resigned but cheery disposition (provided she doesn't hurt). While stroke is not a funny issue, we find lots of stuff to laugh about. Sometimes...well, actually a lot of times, she starts to say something and then can't find the right word and just rolls her eyes as if to say: "Oh brother, there I go again". Other times I'll say it: "Oh there you go again with one of your stroke words" and then I'll repeat which ever one of the dozens of new words in this language of hers that she just used, and we both laugh at it. (I wouldn't do this if she didn't laugh too, but it seems like it helps us both to cope.)

Another thing we like do is make funny faces, just to see who can make who laugh. We usually both succeed. Yea, simple pleasures, but you find 'em where you can.

Marking Time

It sort of seems like we've been marking time with Bettie's progress this whole month, her first at home from the hospital. It's not that there has been no progress...there has. But it has been greatly restricted by a recurrence of pain in the gall bladder area which has had her spending a great deal of time lying on the couch. This is time she could have been working on walking, right side movement, and speech. The issue has been that *#@ drain tube.

I had thought that as soon as the tube was removed (one week ago) everything would be wonderful. But as noted in the previous post, the rest of that day (Tuesday) she went straight down hill. However, by Wednesday morning there was vast improvement. Even more the next day and the next and the next. Each day there was some discomfort in the (former) drain area but not much and seemingly diminishing.

Then came yesterday (Sunday). She awoke with considerable abdominal pain and her blood pressure was up by 20 to 30 points (I had been monitoring it closely as Dr. Greenman suggested). I was able to contact Dr. Greenman and he suggested I bring her in to see just what was going on.

At Auburn Medical Center, Dr. Greenman did an ultra-sound scan and lab work. Though it is sort of frustrating to find nothing wrong, it is definitely good news. We came home after a mere 4 hours.

My daughter-in-law, Veronica's theory is, Bettie is healing slower than normal as a result of all her body has gone through. This is evidenced by the bruise that still appears on her forehead from her fall two weeks ago. If that still shows, it should not surprise us that her insides would be bruised too from the drain, and that has only been out a week. I think she's right.

Today (Monday) she is better, though there is still some pain in the affected area.

Everyone who sees her after an absence of a week or more sees improvement.

I'll just have to be more patient.

On Saying 'Goodbye'

No, no, she didn't die ... so calm down.

As described in Tuesday's post (Maybe We'll Glow in the Dark), Bettie had a gall bladder drain (a small plastic tube) removed after nearly six weeks being in place in her abdomen.

I expected her to immediately feel much better. Instead, by the time we got home from two more appointments that day, she was looking pretty grim. It was literally all she could do to make it up the steps to our bedroom where she collapsed on the bed, barely able to move for the rest of the day. I found it very difficult to determine if the issue was pain or exhaustion. It was probably a fair amount of both.

The doctors had said we would have to watch her closely for the next day or two, and I could see why. For me, it was an evening of hovering. While attending to her that closely, I realized that I could be watching the lights slowly going out. I didn't seriously believe she was dying, but on the other hand watching people die is not something I'm very familiar with.

Just to be sure, I took her vital signs and called for Dr. Stephan, who interrupted his evening to return my call. From what I told him, he reassured me that she should just rest ... "but keep watching." You can bet that I did.

It was during that time, sitting on the edge of the bed, leaning in close, that I began to tell her what a good wife she has been and how well she had treated me these past 50 years. I told her that I wanted her to keep doing that for a long time ... but if she needed to go now, that I -- while it was not an easy thing for me to get out -- I guess I gave her permission to move on ... to eternity.

I can't remember every detail of the conversation, (and it was that: a conversation. She clearly understood and gave me feedback) but I probably should keep that privately between us anyway.

The reason I mention this is because I look back on those moments as very special. Moments that I'll be glad I spent, if she does precede me, no matter how far in the future that may be.

So I'm thinking: "I wonder if this is something every couple should do?" Since we can't know how much time the beloved people in our lives will be, well, in our lives, wouldn't it be a good idea to tell them occasionally, just what they mean to us? I mean the kind of stuff you'd say if you really were saying goodbye for keeps.

Yes, it could be kind of maudlin, but it doesn't necessarily have to be. For me -- and I'm pretty sure for Bettie -- it was a positive time. I'll grant you it might be difficult, but not as difficult as having the same "conversation", in a cold lonely cemetery, on some dreary sad day in the unknown future, hunched over a fresh tombstone.

Note - For the very courageous among the readership of this blog:
Should you find some merit is this suggestion and actually follow through, we would love to have you post a comment on your experience. We know your words will help others. Not on the personal details of what was said, but on your experience with it and how you felt about it. Thanks!

Click here to add your comments and thoughts.

Maybe We'll Glow in the Dark

One can never know what might happen after spending a quarter-hour in a lead suit while X-Ray machines hummed away a few feet from where I sat watching Tuesday morning. Their job was to reveal Bettie's gall bladder on a video screen, just adjacent to where she was lying beneath those probing rays.

And reveal it they did. Well actually they were revealing a dye that had been pumped into the bladder. Bottom line, the bladder is clear and the drain, that has been troubling her for so long, can now be removed.

We were at Auburn Hospital again, two floors below where her home-away-from-home was for the entire month of July. That was a little after 9 O'clock this morning. With the drain issue confirmed, she was moved down the hall where a different imaging device assisted Dr. Gordon Greenman with the actual removal. The internist who we saw last week about having the drain removed (Dr. Donald Stephans) was in attendance too.

Update: A day after yesterday's appointments - on Wednesday morning - within about 30 seconds of each other, both Drs. Greenman and Stephans called me, just to see how Bettie was doing. It sure feels good to be in the hands of such caring professionals.

These things always have risks, and complications are not unknown, so we have to watch Bettie closely for the next few days to see that all is well ... but we're very glad to have that darn tube out of her tummy. That's got to feel better. We always take for granted how good feeling nothing can feel.

The tube out, we had time for just 30 minutes' rest at home before we headed out to Dr. Heide's office for a followup. Both he and his associate confirmed a lot of progress. This is the kind of progress that just sort of sneaks up on those of us here at home, and of which we are largely unaware because we see her every day. Tomorrow we go back to see Dr. Heide's so he can scan the area where she banged her head in last week's fall.

As if all of that were not enough for one day, we next went to the Anti-Coagulation clinic at Valley Hospital where her blood consistency could be checked. It turned out to be still too thick so I am going to have to continue a series of Loxenox injections into her abdomen twice a day, until her Coumadin level improves.

Gee, if it isn't one thing, it's something else.

Well, since she is hopefully headed for brighter days, I won't bore you with the follow up visits and tests she has been through the last few days, but it has been intense. Twelve separate appointments in just the last four business days. Enough already.

Getting Away with Murder

An idiom: "To escape punishment for or detection of an egregiously blameworthy act."
Informal: "To do as one pleases without ever being punished."

One of the most compelling arguments in favor of traditional marriage is the civilizing effect a woman has on a man. Being the product of 50 years of this civilizing, I can say that I am better and everything and everyone I touch is better, because I have had Bettie in my life. It's not that she isn't still in my life, but, at least for now, it is different...and I could revert, I could get away with murder (figuratively, of course).

This realization comes on slowly, creeping into my consciousness like shadows on a summer evening:

"She would probably never know if I..."

"Now is my chance to..."

"I don't think she'll ever miss..."

Some of these thoughts are benign and practical: I saved a little on our car insurance by taking her off the policy and promising to deactivate her driver's license; I moved the bedroom phone from her side of the bed to mine; I'll cancel her cell phone service soon. These are just practical little things, right? Should I tell her? Should I ask her permission? I don't know. But other thoughts feel kind of creepy to me.

Yesterday I was putting something away in an office file drawer. The drawer was pretty full, and I knew very well why: It was half full of folders she had stuffed with travel articles of places we might like to go sometime, or pictures cut from magazines showing attractively appointed rooms...or furniture...or gardens. Just dreams on paper that could be easily duplicated electronically in a few seconds with a web browser and Google.

I had a half-dozen folders emptied, bound for the recycle bin before the guilt hit me: "Getting away with murder I see," I said to myself.

I went into the Family Room, knelt down by the couch where she was lying, and told her what I was doing. We've had this conversation before...it always ended with: "No, I'll go through those things soon." This time she agreed, with a knowing look that said: "Probably not for awhile, huh?"
"Yea," I said, "...that stuff is old anyway."

It got pitched...but because I asked, I got a reduction from felony to misdemeanor. I felt better anyway.

Now I'm telling myself: "Just because you can get away with murder, doesn't mean you should. Go slow here." I don't want to throw away the irreplaceable: Bettie's civilizing influence, just so things can be the way I think they should. That would be a giant step backward.

She's Got Gall...again

Well, to be more accurate, she's got bile again.

If you read the post from July 14 titled Two Steps Forward, One Step Back you may recall that Bettie had an incident with her gall bladder that required the insertion of a drain. The original prognosis was that the gall bladder was infected and should probably be removed. However, removal in that condition posed a higher risk than the surgeons were willing to take. It was decided that a drain could help clear it up sufficiently to do the surgery later...four to six weeks.

For the past five weeks, since the drain was installed, she has gone without bile. Bile is a digestive juice produced by the liver and stored, when necessary, in the gall bladder. (You don't want to know where or how this is "handled" when a drain is installed...trust me.) The bladder condition, the drain, and the lack of bile to help with digestion, has been somewhat debilitating for Bettie. Today we took what will hopefully be a big step toward solving this issue.

During a visit to the internist, the drain was capped, allowing that nasty collection bag to be removed. The "drain to nowhere" is still in place, but her bile and gall bladder should now function somewhat normally. Next week a couple of tests will confirm that all is well...and if so, the drain comes out and the gall bladder stays in. With that accomplished, we will look for more energy, no more abdominal pain, and an increase in the rate of progress...all good things

A Sickening Thud!

In the post titled Setting Up For Rehab at Home, I mentioned "Standing Guard" while Bettie was in the bathroom. Over the nearly three weeks she has been home from Rehab, this has seemed to be less and less of a requirement. She had been taking care of herself quite well, with minimum "supervision"...until this (Monday) morning.

About 6:45 I awoke as she was getting up to go to the bathroom for the third time since retiring the previous evening. Though I had gotten up with her the previous two times, this time I simply said: "You OK, Honey?". She mumbled: "Uh huh" and proceeded into the bath, clutching her walker. The next thing I know I heard this sickening thud that could only be one thing. I was there in an instant and sure enough, she was in a heap on the floor next to the toilet, holding her head and moaning.

As I lifted her up, her hand came away from her forehead, revealing an inch and a half gash, just below her hairline on the left side. (We later concluded that her head had probably struck the aluminum frame at the bottom of our shower door.) The first time I saw a wound like this was when my son Steve fell off our back-yard slide, many years ago. Because the skull is so close to the skin surface, this type of wound can open easily and look much more serious than it actually is. Having seen Steve's cut years ago, I was not as shocked as I would have been otherwise.

Fortunately, she did not bleed a great deal...I say fortunately because she is on a blood thinner and it could have been quite messy. I got her cleaned up and put on a standard size band-aid. Though she was pretty shaken up by the ordeal and complained that her head hurt, I thought it was a relatively minor mishap. Returning to bed, she was able to go back to sleep for awhile.

Later, however, she did not want to get up for breakfast. I brought it to her in bed and called the Home Care office to cancel the therapists that were scheduled to come later in the day. In that same call, I suggested that it would probably be good for the nurse to come and have a look at Bettie's wound. That was the best thing I did all day.

When Tram, the home health care nurse came, she suggested that it would be better to have the cut stitched rather than try to keep it closed with a bandage. So, to make a long story (2 1/2 hours in the Urgent Care facility in Covington) short, Bettie has four stitches in her forehead (courtesy of Dr. Todd Bouchard) and I have a heavy heart for letting this happen.

She seems fine now...I probably feel worse than she does. I deserve it.

And Now, for Something Completly Different

Yes, I confess, I was a "Monty Python" fan...thus, the title.

When Bettie's stroke occurred on June 23rd, I was about three weeks into a rigorous rehearsal schedule for a series of August performances of Meredith Wilson's wonderful musical "Music Man". I had auditioned for and been awarded a role in the barbershop quartet (known in the play as "The School Board"). Though I sing in Northwest Sound Men's Chorus, I have never performed in real stage drama. When I heard of the opening, I couldn't resist giving it a try.

Rehearsals were Sunday through Thursday evening from 7 to 10, beginning in mid June and going through the first performance on August 7th. Though all cast members were not required at every rehearsal, it was a very big commitment. So you're thinking: "I wonder how much they have to pay people to do that?" The answer: nothing, and that's what I love about it.

The production company that is putting this on is Twelfth Night Productions, founded and directed by Mary Springer. Over the years they have done a variety of productions, usually two to four each year, and this summer, it is Music Man. Though it is all volunteer, it is not amateurish. Read all about them on their web site.

Naturally, I had to resign from my role when the stroke occurred, but I remained on the e-mail list of the company. Thus, I know how hard they all worked to put on this show. I had told Mary that I wanted to bring Bettie, if she was able by the time the performances began. She set aside two tickets for me, from a sold-out house...I couldn't miss it.

Try as I might, I could not convince Bettie to come. She was quite adamant, like she is about going to church, that she would not come. She's just not ready. Veronica attended with me, and thoroughly enjoyed it.

Now I'm not a theater reviewer, so I'll leave that to others. But I am someone who appreciates things "American"...and this is, for my money, as American as it gets. Here you have dozens and dozens of people donating huge amounts of time and talent to give their neighborhood, their society, something good, happy, and entertaining. Not doing it for money, but for the sheer joy of doing it, and doing it the very best they could. Trust me: they succeeded. (Here's a video of the curtain call.)

I said they were not paid...that's not exactly true. I saw the pay on their faces out front after the show. Mary Springer's pay was running down her cheeks as I thanked her for her immeasurable efforts and told her that I would do this blog for the show, in case next weekend is not sold out.

So if you find an opening in your calendar next weekend (Friday and Saturday at 7:30 and Sunday at 3:00 - West Seattle High School Theater) you will see a slice of America at its finest.

A Slow Week

Bettie continues to be troubled by abdominal pain, and it is definitely slowing her progress. We're not sure to what extant the pain is just from her gall bladder drain vs "other issues" she wouldn't want me to mention. Anyway, the net effect is she spends more time than I would like, lying on the family room couch.

When she is up and able, her walking is improving by the day. Many times I walk her to the bathroom, rather that wheeling her, and I can see definite progress. It's frustrating to have her down so much when I can see that with some concentrated work, her walking could improve vastly. Patience is the order here.

When she is down, we work on speech skills, word recognition, and small hand skills as she is able. We see progress there too. During "slow" times like these, it is good to keep in mind that from birth to death, the human body is engaged in a continuous effort to be well. Even while lying down, brain cells are working to restore function, re-make lost connections, etc.

Though the week was slow in terms of progress, she did have visits from all three therapists plus the home nurse. Tram, the nurse, suggested that we try to get the internist doctor visit moved up a week to look into the abdominal issue. We did that and will see that doctor on Wednesday.

Meanwhile, the family continues to refine the routine here at home, adjusting to new duties and requirements. On the three days that I go into my office, I awaken Jordan to come into grandma's bed when I leave. I get home a little before noon to relieve her. When school starts, the schedule will have me, with the blessings of my supervisor at work, working from home most of the time. Two days a week, Veronica will take a long lunch and come home to assist with Bettie while I go into the office for meetings and to maintain a presence with my co-workers. It should work fine.

A Mystery Doctor - A Failed Scan

For a long time, Bettie has been interested in health and particularly the diet aspect of it. She and I share this wacko idea that what you eat just might have something to do with how you feel, especially over the long haul. I call the idea wacko only because diet has been pretty far down the list of considerations to many "health care" professionals. I think that is changing in recent years and has not been any point of contention with the professionals that have cared for Bettie since June 23.

In the weeks before her stroke, she was actively looking for a doctor (the doctor she had been seeing, died in March) who shared her belief in a more "natural" approach to health and wellness. Just a week or so before the stroke, she found Dr. X. She had one visit with him and one visit with the cardiologist that he referred Bettie to for her atrial fibrillation. (Good doctors know their limits and refer for conditions outside their specialties.)

Yesterday, I spent over an hour talking with Dr. X about Bettie. He carefully took a full page of notes on everything I said. For now, he'll remain a mystery doctor, out of respect for him and his approach. With Bettie mostly in the care of others, he doesn't want to be seen as attempting to counter anything others are doing. In fact, there is not much potential for conflict anyway. (Not to mention the fact that Mystery Doctor makes a catchy post title.)

My mission with Dr. X was to see if, given Bettie's current condition, he would be able to work with her as we had initially discussed early in June. The answer is yes, and she will see him next week.

Following that visit, I hurried home and picked up Bettie for yet another type of brain scan at Dr. Heide's office. In this scan, they inject a dye into a vein in the arm. From there, enough of it winds up in the brain to provide some pretty vivid detail when scanned with one of those machines where the head is placed in the hole of a giant electronic doughnut. I guess this was to be the final proof that Bettie's clot is gone, though I thought that was pretty conclusive with the previous two "scans". (Click the two Scans links in the Information/Links section at the right for more about the various technologies available.)

Well anyway, it was not to be. Bettie's "surface" veins are currently just too weak to take yet another IV. After two painful attempts, the nurse concluded that we would have to go over to Valley Hospital and have them insert a "deep IV". When the nurse asked Dr. Heide, he decided to simply forgo the test. Enough torture for one day.

We came back home. We'll see him next week.

A Diet to Die For

You may remember from the post on Thursday that we spent some time that day at Dr. Heide's Clinic getting briefed on nutrition.

I must confess that when I heard Raven, the pleasant young woman who greeted us, identify herself as a dietitian, I put up my guard. My only experience with "dietitians" has been in a hospital setting ... not exactly a place known for truly healthful eating, at least not in my (and Bettie's) opinion. (The term Jello-dispenser comes to mind.)

It was probably fun for Raven to watch as I morphed from hostile to accepting as she explained her credentials and approach. It turns out she is a graduate of Bastyr University, one of the premier "alternative" medical training schools in the country. (And they are located right here in the Seattle area; Juanita to be precise).

There are a couple of issues for which we needed dietary help:

• Maintaining a consistent level of foods with sufficient Vitamin K content.
  This is so that her diet does not end up counteracting the desirable effect of the blood thinner that Bettie must take.
  
  
• Stopping further weight loss, and beginning to build back some muscle. (At the time of her stroke, Bettie weighed 122 pounds. She is now down to 102.)

Both these issues are important, and both of them have a feedback method that will tell us how we are doing. For the Vitamin K issue, we go in for a weekly blood check to be sure the consistency is where they want it. The weight loss monitoring is more simple: get her on the scale.

So, what does Raven recommend to arrest the weight loss and begin going the other way? A high calorie diet, of course. Lots of olive oil, nuts and nut butters, cheese, fish, (particularly high-fat salmon). For now, eat the high-starch potatoes before the green vegetables. And how about desert? Oh sure, ice cream, cake, anything dense with lots of calories.

Of course I will be hovering over her at meals, making sure that her plate is clean...secretly hoping that she can't quite finish that last bite (or scoop) of Haagen Dazs Coffee Mocha. Ah, the life of a caregiver. Yes, it's a tough job, but somebody's got to do it.

To the ER...but Home Again

Today we "celebrated" the clot being gone by making a 4-hour visit to the Auburn Medical Center ER, where this whole thing began nearly seven weeks ago.

The gall bladder pain, described in the previous post, got to the point where it hurt her, even when she was lying down. That was the signal that Dr. Spens' nurse said should trigger a trip to the ER. (Of course the issue of pain is complicated by the fact that Bettie cannot accurately relate to us the severity of it.) Better to err on the conservative side, since we can't be sure. That's what we did.

In the ER, Dr. Spens visited us and told us the strategy: "We'll scan the gall bladder and be sure it is OK and the drain is properly in place. If all is OK, we'll assume that the pain is from the drain itself. After all, it is a piece of plastic rubbing on her insides and that is bound to cause some irritation. I'll prescribe a pain killer to help, as the drain needs to stay in for another two weeks."

And that's how it turned out. She's resting comfortably in the family room as I write, looking forward to Friday night pizza. Me too.

The Clot is :-) The Gall Bladder is :-(

Big news today: the clot is gone, I saw the evidence today!

We had our second appointment at Dr. Heide's clinic. First we spent nearly an hour with the dietitian, learning how to feed her to get her weight back up and keep her blood consistency stable. After that, we spent the better part of the next hour having her head examined, quite literally.

In a typical clinic exam room, she lay on the table with a crown-like gadget on her head, to which were attached two ultrasound probes, a left and a right. The technician aimed one probe at the vein where the original clot lodged in her left brain hemisphere, and the other at the corresponding vein in the right hemisphere (for comparison).

When he turned it on, we could watch, on a computer monitor, electronic depictions of the sound waves, picking up the blood flow through each vein. A sound amplifier and speaker completed the information flow.

The device ran for just over half an hour, displaying nearly identical pictures of flow through both veins, side by side. The flow sounded the same on each side, and the digital readout of volume was just very slightly better in the right (non-clot) side than the left. I asked the tech if he could tell how long the clot had been gone, but he could only guess that it was probably breaking up fairly soon after it first lodged there. No way to know. Many clots never break up.

Clear flow of blood, means that whatever cells in the clot area survived, should be able to return to good function. It also means good flow to facilitate retraining of adjacent cells. I may not be describing it in good doctor-talk, but any way you say it, it is good news.

-----------------------

On the not-so-good side of things is this: For the last couple of days, by afternoon Bettie has been way more comfortable lying down that any other position. So you're thinking: "Well duh, who isn't?" But this is different.

Her gall bladder area seems to be giving her trouble each time she gets up, at least later in the day. I've talked to the nurse at Dr. Spens' (the doctor who is handling Bettie's gall bladder issue) office both yesterday and today. We decided to move Bettie's follow-up visit up by a week. She'll see Dr. Spens on Monday. Until then, she may be down more than she's up.

Comparing the two issues: No Clot vs (maybe) No Gall Bladder ... well, its a no brainer, isn't it?

A New Look for the Blog

A few days ago I mentioned that hereafter I would only be adding a post to this blog every week or so, but would put in daily comments. Fortunately, I had the good sense to ask my co-editor...the one with the brains, what he thought of that idea. Steve's quick response: "No, no, no..." and he listed several reasons why that was not a good idea. His (better) suggestion was to make more and shorter posts and to title each one something related to the content. Well, duh, what a concept.

The meddling little twit even wanted me to go back and rename all those brilliantly titled posts: "Status - Date - Time" with a title that actually means something.

OK, OK...I did it. All the content is as it was, but every post now has a (clever :-o) title that might give you some reason to want to actually read it. You'd better enjoy it...it took me, like forever.

"Is there anything I can do to help?"

When this first happened, I couldn't count the number of people who expressed a desire to be of help, as this post is titled. At the time, I had no idea if I needed help and if so, what kind. I needed my wife back, that's what I needed..."Help with that if you can", I thought. Now that I've lived a little over a month with stroke in my life, I have a clearer perspective than at the first.

Our home situation is unique in that we have live-in family. Our son Tim, his wife Veronica, and their two children: Jordan, 17 and Jonny, 14 have been with us since we bought our present home, five years ago. That's a different story, but it has worked out for us quite well...and now it is a godsend.

I often would tell people: "We're like the Waltons (a 70's TV series) and I'm the grandpa." Funny thing: in the TV show, Ellen Corby, the actress who played the Grandma, had a stroke, just like Bettie's: speech impeded somewhat and right side partially paralyzed. She was off the show for a time, then came back, stroke and all. Her role on the show only lasted another couple of years, but she lived 20 more years after the stroke. Will Geer, the actor who played Grandpa, died within a year after her return to the show. (Hope we're not like the Waltons in that regard.)

I mention the home situation only to make the point that what I say here about the need for help and support is being met for me by live-in family.

But if you know of another couple where a spouse has suffered stroke, the unaffected mate needs help immediately. They want to spend every possible minute at the hospital for those first few weeks. This means home meals, lunches for work, house and yard maintenance, car servicing...all the things that take time away from being with the loved one are opportunities to be of service. If you are inclined to be of help, don't ask "Is there anything I can do?". Just pick something and say "I'm going to ...." and then do it.

Once the stroke patient is home, I don't think one person could possibly provide safe and responsible care. If there is no family or other support network, then a live-in facility is probably the only reasonable option.

If you find yourself in that situation (and you should not think "It can't happen to me") your choices for providing that level of care are: be rich or have long term care insurance. Think about it...this is not something you want to try at home...alone.