Archive for January, 2014

Into hospice

Friday, January 31st, 2014

Shannon and I moved back to the Village today, but this time for hospice care. Here’s today’s letter to my family:

Dear family,

I’m sorry, but this will have to be another quick note. We’re in the village now, Shannon’s IV machines have been turned off, and we’re moving forward with courage and resolve. At least she has the courage and resolve. I’m full of trepidation, but I’m moving forward with her nonetheless.

We had a fantastic day with Katie, Mia, and Mark. We also had a wonderful visit from Candy, which was truly appreciated and touching.

I had to make some difficult but essential phone calls today. I’ve started the arrangements for the disposition of Shannon’s body. There are some papers to sign and fax and then things will be arranged. We’re working on other plans for the near future as well. Shannon is a bit reluctant to want us to hold a funeral. She’s kind of hoping to say her goodbyes to family and other loved ones over the next week or two and then just be allowed to move forward without too much fanfare. We have the tremendous blessing of having this time to be together with family and share love with Shannon while she’s still with us, so I’m inclined to agree with her that it might be nicer to expend our mutual efforts on being together now and including Shannon. I’m frankly worried that family members will feel hurt or offended if we choose not to hold a service. I’d be very grateful to receive honest opinions.

Shannon’s health is maintaining. We were really worried that moving into hospice care would mean that we would be denied some of the things we consider necessary to keep her free from undue suffering, such as frequent blood transfusions. We were told blood transfusions weren’t a service regularly provided in hospice care, but they checked with their home office and have agreed to do that for us. So we’re at peace with the decision we’ve made to terminate most care and focus on keeping her comfortable and happy.

I don’t think I have anything else meaningful to add to yesterday’s note. The need for Shannon to be freed from her malfunctioning body is evident to everyone who comes to visit us, and I’m convinced that it is helping each of us to gain peace and acceptance of our own. Of course that peace is accompanied by numerous tears and a wrenching sadness. But it will get better. As I think I mentioned yesterday, in the meantime, we’re together, our children have started arriving and adding light to our lives, and we feel surrounded by love.

In many ways, I’ve come to see this hospital and its grounds as a sacred place. We spent most of 2013 here, experiencing joy and sorrow in never-ending waves, and always doing it together. There was time to rest and reflect and just to be together. Everywhere I look, everywhere I go here at the City of Hope, I see things we saw together, things we did together, places we walked hand-in-hand, and challenges we faced together. I can’t feel sad about being here because my memories of the place are so sweet.

I’ve become worried that I’ll forget the sound of Shannon’s voice. I don’t think I have any audio or video recordings, so I’m going to make some tomorrow. I’m going to get each of the kids and myself together with her and just take videos of ourselves talking and enjoying being together. I wish I’d done it in happier times, but this will have to do. I just can’t bear the thought of forgetting.

And we need to snuggle now and sleep. Many thanks to everyone for everything, as always. We love each one of you and feel your support.

Love,

Michael

P.S. We appreciated the kind note from Karen and Will (among many others we’ve received), and will get them added to this mailing list tomorrow. Sorry I wasn’t able to get to it today. Busy day as we made the transition to hospice care.

Another day

Thursday, January 30th, 2014

No picture or humor again today. I need to wake up in a couple of hours and I want to capture my daily letter to the family. So here it is:

Dear family,

It’s exceptionally late and I have an early morning tomorrow, so I’ll try to make this note brief. But it’s been an eventful day and I want to at least share some highlights.

Katie, Mia, and Mark arrived late this evening. It’s wonderful to see them and they’re all doing well. We stayed up talking until just a few minutes ago – 3:30, to be exact. A lot of our conversation centered around Shannon’s status and our feelings about her, of course. We shed a lot of tears, but we also shared a lot of wonderful memories. I’m so grateful they’re here, and I’m looking forward to Andy, Paul, and Melissa getting here too, along with our siblings who are able to come. We’re grateful to have this opportunity to say goodbye, to right any wrongs, to ask for and give forgiveness, and to send Shannon forward to the end of her life on the wings of our undying love. Katie talked about a friend whose father-in-law recently passed away, and the friend’s husband is so sad that all things weren’t perfectly right between his father and himself. He wishes he had the chance that we have. So in spite of the heartbreak we all feel and the difficulty of doing this, we’ve realized how fortunate we truly are and we’re taking full advantage of it.

Incidentally, I would be grateful if those who are coming would send me a quick note telling me when we’re expecting you. I’m pretty sure Candy is coming on Friday and Chris is traveling on Tuesday and visiting us Wednesday and Thursday. I know Robin/Carol and Melanie are planning to come, but I didn’t really figure out when that’s happening. Sorry about that.

Perhaps the biggest news today is that we expect to move into hospice care tomorrow (Friday). We have an appointment with the hospice company we’ll probably use and we have a reservation at the Village, which has some rooms reserved for that purpose. I’m told the chief difference between those rooms and the one we stayed in before is that they have facility oxygen available. We’ll find out soon whether there are any other differences. The room in the village will be a much better place to gather and enjoy each other’s company. I’ll let everybody know where we are when we know.

I wasn’t really prepared to end Shannon’s hospital care and move into the hospice phase so soon, as this means the termination of various life-preserving treatments. The place we’re planning to use offers “palliative care,” though, which was explained to us as a transition phase from full hospital treatment to the typical hospice emphasis on providing nothing but comfort care. It’s very important to us that Shannon retain all her faculties for our upcoming visits with family, so we’ll make sure the palliative care will include what she needs to make that possible.

Our doctor told us this morning that he thinks he could preserve Shannon’s life longer than the 2-3 weeks I believed he had told us yesterday. Shannon immediately and emphatically asked him not to do that, which came at first as a bit of a surprise to me. As the day went on, though, I think I finally came to understand. She is so tired, so worn out, so used up. She has given literally everything she has. Now that her amazing efforts have no hope of bringing us to a cure or even a significant period of remission, she just can’t continue. As I watched her try to move her swollen, painful, dying body throughout the day, I think I finally came to accept that the end for her must come soon. I’ve been so worried about myself and so desirous to keep her with me as long as possible that I hadn’t been able to see that “possible” and “bearable” aren’t really the same thing. I know she wants to be with me too, but she needs to be freed from this unbearable situation.

Our day together was sweet. We spent a large part of it sitting together in her bed reading. Andy sent her a great book for Christmas and she’s about 50 pages from the end. It’s become difficult for her to read, so she asked me if I would mind reading the rest of it to her. We only got through maybe 10 pages or so – there are lots of people coming in and out of her room all the time – but it was such a joy to just sit close together and read the book. We also spent a (too) short time just cuddling. It felt so good. I don’t know how I’ll live without her near me. I just don’t. For now, though, I want to be in the moment and treasure her presence. I’ll figure out how to go on without her when I have to.

Okay, I have to be awake in three hours, so I absolutely must end. There are a million more things I want to say, but they’ll have to wait for another day. Many thanks to all who have written, called, prayed, cried, and in many other ways shown your love for us. Several of you have asked how you can help us. There’s only one thing I have to ask: reach out to your families and other important people and tell them how much you love them. Put your arms around them and hold them tight. Forgive offenses and ask for forgiveness. Don’t waste time – do it right away. Those people are the only thing that matters in life.

We love each one of you. More tomorrow.

Love,

Michael

Another day of love has come and gone. I can’t wait until Friday when Shannon and I can be together 24/7.

See you tomorrow.

Bad news

Wednesday, January 29th, 2014

I have no picture today. Also no humor.

Today I learned that my beautiful wife Shannon is dying. I think I’ve known it for quite a while, but there was always what I considered to be a reasonable chance of full recovery. No more. Our doctor gave us the word this morning that our hope is gone.

Here’s what I wrote to my family this evening:

Dear family,

By now all or most of you have heard today’s news regarding Shannon’s condition, but I wanted to share this again just to make sure we’ve reached out to everyone who would want to know.

This morning, Shannon’s doctor spoke with us and let us know her cancer has progressed to the point where she has only a few remaining weeks to live. Her chest cavity and belly have been filling with fluid, which they have been removing and testing. Today the test came back positive for leukemia. The doctor says it appears the chemotherapy isn’t reaching beyond her blood and bone marrow, so it doesn’t seem stoppable. Even if they could stop it, she no longer has the strength to recover.

Shannon has fought this disease with incredible strength and determination. She’s the toughest woman in the world. She’s done everything right, but she’s now very tired and it appears her fight is nearly over. Our children are all coming within the next few days to be with her one more time. She remarked several times today that she doesn’t feel like she’s dying, so I think we have a great opportunity to spend some happy hours with our children and granddaughter.

My emotions have been very strong and somewhat bitter today as we’ve notified family and tried to come to grips with our situation. I have never felt so brokenhearted and hopeless. I know peace will come, though, and Shannon and I are determined to live happily until the very end. We’re grateful for the year that cancer treatment has added to her life. It’s been a very happy year and I will always treasure the fact that I was able to spend every day of it with Shannon. Our memories are nothing but sweet.

My secret plan was to run away together somewhere when we got the news that the end was near and just live out the rest of her life doing things she loves. Alas, that’s not possible now. She’s too sick. So I plan to fill her remaining days with family, happiness, and love, love, love. I know she would love to hear from any of you via email, phone calls, or visits. She’s still feeling well enough to talk. I’ll let you know when that’s no longer something she can do.

As always, I’m deeply grateful for the love and support we’ve received during the past year. We truly feel wrapped up in your love. I know we’ll continue to need it in the days to come.

If everybody is willing, I’ll start sending out daily emails again. It helps me to reflect and focus and I’ve heard from several of you that you value the information. If you absolutely don’t want to hear from me every day, please let me know and I’ll find a way to get you off the distribution list.

We love you all.

Love,

Michael

There’s nothing I can add to that. My heart is shattered. My life is over. I have no idea how to continue without Shannon by my side, holding my hand, encouraging me, lying next to me at night, and loving me. I’m starting to understand the feeling of suffocation grieving people describe, and the suffering has only just begun.

For now, though, we’re still together, she’s still alive, and we still have each other. I’m bound and determined to make these last days sweet ones for her. Help me, Loyal Readers!

That’s all for tonight. Help me.

White console

Tuesday, January 28th, 2014

whiteorgan

Here’s a closeup of one of the organ consoles from yesterday’s Great Art. Pretty fancy. I can’t decide whether it originally came from a movie theater or a funeral home. Any opinions, Loyal Readers? Great Art courtesy of the exclusive iPhone-cam, taken in March, 2012 at the previously-mentioned Northlandz model train and organ extravaganza in New Jersey, and part of my famous Machinery series.

This one wasn’t in the Electronics series. Somehow I doubt there are very many electronic components in there.

Pretty good day for Shannon today. Not the best, but far from the worst. Her white cell count was down by a little. Her pneumonia seems a little bit better, but we really didn’t get any data in that area today. Her electrolyte depletion seems to be pretty well recovered by now.

Now for today’s challenges. Her sodium and protein levels are low. That’s what seems to be causing the terrible swelling she’s experiencing in her legs and feet. They’ve asked her to restrict her liquid intake for a while in hopes of helping her get the levels back under control. They also had a gastrointestinal guy come check her tummy out today. He says there’s a bunch of fluid in there, which was what I was suspecting. Apparently, they’re going to drain it tomorrow, which I hope will make her digestion better, which will in turn make it easier for her to eat well.

In the area of draining unwanted fluids, they got another 600 milliliters of fluid from outside her left lung again today. The doctor says if he keeps needing to empty her chest cavity out so frequently, he’s going to have a “pigtail” put in. That’s a thin tube that stays in her back and can be drained by a nurse any old time.

We were a bit worried about what the cause could be for all the swelling and accumulation of fluids in ┬ávarious places. Could it be kidney failure? The answer: no. Her blood chemistry says her kidneys are working just fine. They think it’s the low protein level. So they’ll hopefully start addressing that tomorrow.

It’s always something lately, isn’t it, Loyal Readers? Challenges. But we’re equal to them and we’re pressing on regardless.

I got some work done today! I expect to be able to place some orders for promotional materials for the upcoming show tomorrow. I think we’re going to be where we need to be when we need to be there.

And I’ll leave my Loyal Readers with this exciting Morrowlife Employment Agency job opportunity: rogue kangaroo!

See you tomorrow.

Three consoles

Monday, January 27th, 2014

threeorgans

Here’s a room in the same building as the world’s longest model railroad. Why organ consoles? Why not? I guess the guy likes model trains and organs. Great Art courtesy of the exclusive iPhone-cam, taken at Northlandz in Flemington, New Jersey, and part of my famous Electronics and Machinery series.

A close look at that organ console on the right will reveal that one’s made of a bunch of electronic keyboards. Sadly, we never heard it or any of the others being played. Maybe next time. We were so exhausted after walking through the model railroad for hours that I don’t think we could have listened to any music at that point.

Today was a very good day for Shannon. She reports that she woke up at 3:00 or 4:00 this morning and just felt . . . normal. It was amazing! No real pain, she could move her muscles the way she wanted to, her head was clear, she was just fine. She was as excited as I’ve seen her in a long time.

Sadly, it didn’t quite last all day, which left her kind of discouraged by this evening. I understand, but I still think there was significant progress. She looks noticeably better, she can move better, she has more stamina, she’s doing just fine on much less oxygen, she’s eating better, she’s just better in all ways. I don’t think she really saw that tonight, but I did.

We moved today. Apparently, they had somebody sicker than Shannon who needed closer monitoring, and he/she could only get that in Shannon’s room. So we’re now on the fifth floor – room 5221. Drop in and see us. This room is the “negative pressure” room, which means it’s a bit smaller than other rooms in order to leave space for an anteroom. I think they use it to isolate extremely sick people. That’s not the case with us, though, so we’re just living in a slightly smaller room for a while. Not a real problem, though.

Shannon had her stomach x-rayed from several angles today. They’re trying to figure out why it’s so distended. So far, they haven’t discovered anything seriously wrong, which is good. She just needs to get as much exercise as she can and let time pass by. That will hopefully fix her up. We were a bit worried that maybe there was a blockage (there isn’t) or maybe fluid had accumulated outside her guts like it did around her lungs and heart (it did, but it doesn’t appear to be very bad at this time). So we just press on and have confidence that it will resolve itself.

Her white cell count was down to 5.7 today. That’s down from 6.7 (or so) yesterday and 7.7 the day before. And correspondingly slightly higher numbers the days before that. That’s good progress and things are happening just as we expected, leukemia-wise. No cure yet, but moving steadily towards getting back into remission.

The pneumonia continues to improve. A few nurses have told us over the past few days that they couldn’t hear any rattling in her lungs. I told the Infectious Disease doctor about that today and he had a listen for himself. He can still hear a bit of rattling, so we’re not done. But her lungs are clearer than ever. She was on 6 liters/minute of oxygen yesterday. They turned it down to 4 this morning, 3 this afternoon, and 2 this evening, and her blood oxygen level is comfortably above 92%, which is their desired minimum. She’s been much higher than that. So I’m feeling good about that aspect of her recovery.

While I’m sure we’ll be here for several more days, I’m beginning to think maybe we’re halfway done with our current stay. That’s not an informed opinion – just an opinion. And maybe I’m right.

I wrote Shannon a bit of a mushy email this evening. Normally, I wouldn’t share this kind of thing, but today I want my Loyal Readers to know how I feel about my wife. It ought to be edited for some awkward prose, but I’m copying it exactly as I wrote it. I hope my Loyal Readers will forgive my self-indulgence. Here it is:

Dear Shannon,

Today was a good day. I’m feeling so, so encouraged. Please stay courageous and strong. I feel like the right things are happening, albeit more slowly than we would like.

A familiar and wonderful thing happened on my way home. “Laughter in the Rain” came on and, as has happened so many times before, I was instantly 17 years old again and experiencing the giddy happiness of meeting and falling in love with the girl who would soon become the very center of my life. It is such a wonderful feeling, I just can’t help falling in love all over again. I played the song over and over and felt warm, young, happy, and in love.

Then something new happened. Suddenly, 38 years passed and it was 2013 and we were living in the Village. As we took our daily walks to the clinic, through the rose garden, or just around the campus, I fell in love again, over and over, every single day as we walked hand in hand. And it keeps happening.

I’m so happy we’re still together after all these years. You’re still that cute, happy, loving, mysterious girl I fell in love with all those years ago. You’re still the one I want to hold hands and walk with for the rest of my life. I love you more than I can possibly express.

Love,

Michael

Shannon’s college roommate Debbie and her husband came to see us on Sunday! It was great seeing her again and meeting her husband. She has commented here on the blog a couple of times and was planning to come see us, so it wasn’t a total surprise, but it was still a treat. Thanks, Debbie!

Not much work got done. I don’t know why. Shannon and I are both planning to get our noses to the grindstone tomorrow. I have several things that need some lead time before the conference, so I’m really running up against a pretty hard deadline soon. We’ll make it, though.

Mark appears to be doing well without us at home. I hope he doesn’t get to liking it too much. We’ll be back.

And that’s it for tonight. I’ll leave my Loyal Readers with this exciting Morrowlife Employment Agency job opportunity: basketball-player deer!

See you tomorrow.