- April 2007 news updates

Tempe, Arizona
Learn to get in touch with the silence within yourself, and know that everything in life has purpose. There are no mistakes, no coincidences; all events are blessings given to us to learn from.
Elisabeth Kubler-Ross
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archived news updates - April 2007

30-Apr-07 - The Decision (from Tom)

Liz has decided to have the surgery for a permanent colostomy. The surgery will be Tuesday afternoon 5/1 and will start at about 4:30 p.m. The decision was made gradually, after a long weekend of questions being asked and answered, thought and deliberation, emotion and tears:

As soon as I had finished my last update, I talked to my mother who reported that Liz had another really bad night on Friday - lots of pain, like a return to the emergency room when she was readmitted so many days/weeks ago. Liz had cramping and at times could not breathe. Mom described it as the "night from hell." The doctor was called three times but there was no real relief until early Saturday morning 4/28, when the nurses finally just put her out with meds. Liz finally rested. No doubt it was more than just physical pain Liz endured that long night . . . I stood and watched Friday night as the doctor explained her options. Liz could not help but cry at her situation. She was frustrated at not being made fully aware of just how damaging the radiation would be on her remaining intestine. There were feelings of futility and helplessness that no doubt carried on through the night.

Saturday morning, Mom somehow found the energy to attend a colo-rectal conference at St. Josephs hospital that Liz herself had planned to attend, but now could not. I don't know how she did it; Mom was wiped when we talked on Saturday morning. But she did, and she returned to camp Desert Sam with lots of information. There were other sources of information consulted (no, not from all over the country.

And, of course there was the outpouring of support from you all. The ones that were sent to me were dutifully passed on to Liz, and I know that some of you simply emailed Liz yourselves. (I know she read them, as she told me that she liked the song I included in the last post.) Thanks to you all, you can't know how much it means.

David Wilcox painted a picture for me once that has stuck - he says that in the soul of us all there is a cup that holds Love. At times, the cup becomes cracked, or broken, or even shattered by the stones of life -some small and easily managed, but some too large to deflect. It is in those times even the ever-present essence of Love becomes too hard to hold within. But, it is also at those times that an out-pouring of Love can keep full what remains of the cup, until the inevitable repairs of time and will and spirit can slowly take hold. I picture the energy you share over these multiple connections as a waterfall of Love, pouring over Liz, filling her cup with as much as it can hold at this time.

Saturday day and night was better for Liz. Pain meds kept her pain down through out the day. I remember once (maybe it was on Friday night), the nurse came in with the inevitable question, "where is your pain now, 1-10." Liz said about a 6. And the nurse responded, "so, are you uncomfortable?" I had to chuckle at the thought of a 6 being anything less than uncomfortable. But Liz said she was fine.

Mom took a night off on Saturday, sleeping at home for the first time since she could remember - a long hard sleep of 10 hours. (Ok, ok, some of you kids are snickering, thinking that's just normal, but for us "mature" types, any thing like that is somewhat of a miracle.)

By Sunday 4/29, Liz had decided what she wanted and started telling people slowly, in her own way, what she thought she would do. She called her best friend saying she would not be able to stand up for her at her wedding next weekend. And, late Sunday night, about 9:15 pm or so, she made that decision final. We can all have our opinions about what we thought Liz would, or could, or should do, but she is at peace with her decision, and that's all that matters.

The surgery will be long this time. There is apparently a great deal involved in creating a permanent colostomy. The doctors will also take a look at that mass down by her sternum and see what's up with that.

As always, keep those candles lit against the darkness of Fear. Trusting in Love, however it is you conceive her, keep one palm toward the Light, wherever it is that you find it, and the other toward Liz.

27-Apr-07 - A question for runners (from Joyce)

Joyce has the encouraging heart that God gives to Mothers. As she continues to lift Liz up she gives that same encouragement to all of us. Today she posed these questions to Liz's running friends:

What is it like to come to the end of a very long rope, tie a knot and hang on for dear life?
How do runners finish when their lungs feel like they will explode?

The questions were posted on running lists with members from around the world; you can see the replies below among the guest messages...

24-Apr-07 - Quick update (from Tom)

This past couple of days has been up and down for Liz. It was late Saturday night 4/21 that the news came in about the biopsy. Such great news. But as my last update said, doctors still have much to figure out to get Liz whole again. And, as life is known to do sometimes, the good news was tempered by a bad day on Sunday 4/22 - swelling and pain were up again. We had an impromptu celebration for Jessica's Birthday at the hospital out in the waiting area. Liz took us in one by one, but was really not up to a celebration. Jessica took her cards in to share with her mother, and they were able to share their special day together. You can see pictures here.

Yesterday, (Monday April 23), was quite eventful for our girl. In the morning the doctors performed a colonoscopy to get a better idea about what was happening. The doctor thought he might place a stent into the narrowed area of the colon/rectum. However, once he got in he decided against placing the stent. The doctor said that the colon has real potential for normal functioning and is just swollen right now. The stent apparently has a very real chance for complications, including migration inside the colon. Of course, the doctor would rather avoid such complications while there is still a chance for recovery.

Then, the next planned step was the replacement of the stents in the kidneys. These were placed a while back to make the kidneys function normally and help remove the fluids that are building up. Apparently they needed to be replaced, or made to work better. Well, at the last minute there was a cancellation. So, last night Liz went in to get this procedure done. Took a little longer than I expected, but she was back at her campsite (room) by 8:30 or so.

Hopefully today Liz will have time to rest from yesterday's events. As my mom said in the last update, they are camping out at the Desert Samaritan (not ready for national park) campsite for the foreseeable future. The doctors have promised not to release Liz this time until they are sure she is functioning normally. Today (April 24) or tomorrow they may start trying to introduce some sort of liquid diet (that does not involve an IV) and test the work.

As for the mass, the doctors will continue to look at it carefully to see what it does. The biopsy was negative, but I think they are learning (as are we) that the best tests medicine has to offer are not the only place to rest (with any certainty) our trust. We know where that trust should be placed, don't we?

THIS JUST IN: As I write, my mother calls. Liz had a productive ("crappy" night). LOL. Ok, ok, my Mom says the doctor did not laugh either. But this is a good sign for her. Isn't it amazing that after over two weeks of no eating at all the body can still produce waste? The nurses told us that we are all constantly collecting dead cells, toxins, and other waste from all over your body that must be passed out. It's not just what you take in from food. Anyway, Liz's body finally started releasing some of that last night. Hurray! Just another example of life's paradox - how having a "crappy" night can be a wonderful thing.

I will write more when we know more.

Until then, keep those candles lit against the darkness of Fear. Trusting in Love, however it is you conceive it, keep one palm toward the sky, and the other toward Liz.

Thanks again for all your support.

22-Apr-07 - PostScript on Incredible GOOD News! (from Tom)

We share in your expressions of joy at the wonderfull news yesterday. Thank you again.

Some of you have also responded with questions about where we go from here. Well, we ask that you continue sharing your love and support for the time ahead. Here is part of an email I received from my mother this morning, elequent as only she can be, which may answer some of your questions.

"It is still in the room--relatively quiet and motion free. I have become accustomed to the sound of gurgling oxygen water. I pretend that it is a stream next to my camp. Last night was number six at this new camp in 401-C; ten nights all together at the Banner Desert camp ground. And it is not yet time to leave. Liz had a rough night. She developed some new discomfort high on her right side where the swelling has increased. Now that we know that she does NOT have cancer we both wonder what she is up against and are most anxious for the specialists to figure it out. She was excited to hear the news last night that the mass is not cancer but instantly her joy switched to frustration when she realized she was back on uncharted waters."

I will write again when we know more. It may be a while. It's such a joy that Liz is cancer free. And while her marathon has suddenly, wonderfully, been shortened from what the Doctors were saying just a few days ago, Liz still has a few extra miles to run. Again, she can not do it without your love and support.

At times like these, with so much anger on the news and uncertainty surrounding a loved one, I turn to music. A favorite inspirational song of mine in times of uncertainty and fear comes from David Wilcox ( I will share his words with you (with very slight changes for format purposes), as I play the message of hope over and over in my head. Click here to hear this song:


You say you see no hope,
you say you see no reason we should dream that the world would ever change
You're saying Love is foolish to believe
'Cause there'll always be some crazy with an army or a knife
To wake you from your day dream,
put the Fear back in your life...

But look, if someone wrote a play just to glorify what's stronger than hate,
would they not arrange the stage to look as if the hero came too late
He's almost in defeat
It's looking like the evil side will win,
we're on the edge of every seat,

But, from the moment that the whole thing began
It is Love who makes the mortar
And it's Love who stacked these stones
And it's Love who made the stage here
Although it looks like we're alone
In this scene set in shadows
Like the night is here to stay
There is evil cast around us

But it's Love that wrote the play...
And, in this darkness, Love can show the way

So now the stage is set.
You feel you own heart beating in your chest.
This life's not over yet.
so we get up on our feet and do our best.
We play against the Fear.
We play against the reasons not to try
We're playing for the tears burning in the happy angel's eyes

For It is Love who makes the mortar
And it's Love who stacked these stones
And it's Love who made the stage here
Although it looks like we're alone
In this scene set in shadows
It looks like the night is here to stay
There is evil cast around us
But it's Love that wrote the play...
And, in this darkness, love can show the way

So, keep those candles lit, a sign of Love and hope conquering the darkness of Fear. Trusting that love, however it is you conceive it, keep one palm toward the sky, and the other toward Liz. I firmly believe that no matter your religious or spiritual beliefs, it makes a difference.


22-Apr-07 - Incredible GOOD News! (from Tom)

The biopsy came back negative for cancer!

Honestly, what else can I say?

Except, thank you, thank you, thank you,
to all of those who said a prayer,
or who lit a little candle,
or who just closed their eyes and opened their palms toward Arizona.

Have a blessed Sunday. I know we will.

20-Apr-07 - Yet I Will Be Confident (from Tom)

First, thanks for the amazing outpouring of support after that last update. People are lighting candles all over the world for Liz.

Ok, right to it . . . Liz is still in the hospital, but the planned surgery to fix her colon was cancelled at the last minute on Tuesday 4/17, rescheduled and cancelled again on Wednesday 4/18, and now has been indefinitely postponed, pending the continued relief on her system. The swelling, which on Monday was described as looking like a full term pregnancy, has diminished considerably. The pain has gone down to around 5, more or less, from what Liz said on Tuesday was a 12 or more (on the ever lovable 1-10 system that the hospitals now use). (Did you ever notice that on the card in the hospital rooms, the face is still smiling for a moderate pain level of 2 - I don't know about you, but I'm not smiling with moderate pain.) The drugs they are using are great (thanks Pfizer), and they are not knocking Liz out. I think I can honestly say that Liz is in good spirits, for someone who's in the hospital, and who just had surgery, and who hasn't eaten in days, and . . . well, I could go on.

So, anyway, the doctor really wants to avoid doing any surgery at this point until he knows more about the mass. Yes, the mass; well, they did a biopsy today and are running special blood tests to measure Liz?s CA-125 levels and such. We are told that the biopsy results may be in by Saturday, but maybe not until Sunday. The blood results may be in tomorrow, or Saturday. This is all, of course, "doctor-speak" concerning the absolutely relative measure of "doctor time," so you just never know. Frustrating.

Liz has moved out of the pre-surgery area and is in a much bigger, nicer room. The struggle (besides the pain, and the wires and the tubes and the . . well, you know) -- is that in the last 11 days Liz has eaten no more than a couple bites of apple sauce and a little Jamba Juice (all that during her brief 30 hours at home last Sunday afternoon/Monday). At least she can joke about it. We asked if they would put a chocolate shake in her IV. The nurse was not amused. Liz is happy to let you eat in the room - as long as you don't enjoy it (and it's not a chocolate shake). Did I mention what's she's craving? Well . . . you know. Otherwise, Liz is comfortable, and talkative, and walkative as well (careful not to flash too many people).

Mom is camped out on her cot in the room. She has an APB on the "really good cot" that must be in use somewhere else. We will be distributing pictures and a reward soon. After last night, we will make sure all heavy objects are removed from around Liz before bed time so Liz can only throw relatively soft blankets at Mom's head when Mom dreams too loud in the middle of the night (also known as talking in your sleep). Mark, Jess, and Andrew are also constantly present. They have all have staked out their space. The rest of us now bring our own fold out chairs (those floors really get hard), or sit just outside the room at the table. Fresh troops have arrived (Yvonne), and the clan is hunkered down again for the long haul.

I think we have all gotten over the initial shock and dismay. Now, we are waiting word from the test results.

Liz thanks you all for your emails and prayers and intentions and positive energy. If you reply to me, I forward your words right to both Liz and Mom. I am not sure they can get them at the hospital, (which still lives in the dark ages of dial up), but I know Mom goes home at least once each day to collect your spirit and take it back with her

I will post again when we know something definite. Can't say when that will be. Until then, keep those candles lit and the positive feelings floating toward Arizona.

Liz wrote to close one of her updates months ago:

"The Lord is my light and my salvation; whom shall I fear? The Lord is the stronghold of my life; of whom shall I be afraid? Though an army (cancer) encamp against me, my heart shall not fear; though war (cancer) rise up against me, yet I will be confident." (Psalm 27: 1, 3)

I think she still means it.

God Bless,

18-Apr-07 - Light a candle for Liz - Moments Matter (from Joyce)

I ask everyone to light a candle for Liz. She needs this light before her as she makes her way through this dark tunnel. There are candles in grocery stores just for this purpose and they are long burning--usually in tall glass containers. It would mean everything to me to know that these candles are burning all over the world for Liz.

Liz has an assignment. I am not clear about all the details but I am absolutely sure that she has come to teach us all about love and that moments matter. Never spend one moment NOT doing what you love to do and with those you love most.



[Webmaster note: Snap a digital picture of your candle burning and then click here to send it to me. We'll light up the website with your candles]

17-Apr-07 - Your Prayers are Needed (from Tom)

I am Tom, Liz's brother. Normally my Mom, or Liz herself would be sending an update about now to tell your of Liz's progress. But, neither can do so right now. So I am giving an update and request once again that you all send thoughts of hope toward Arizona.

As you all know, Liz had her colostomy reversal last week, the reversal was considered a success. Liz returned home on Sunday 4/15, much worse for the wear, but everything was looking up -- the long awaited end to Liz's marathon was heading toward the final stretch. Of course, she has been in pain after her surgery, but nothing really unexpected . . . until last night.

At midnight the pain was simply too much for Liz to bear - Mark and Mom took Liz to the ER. Something had to be wrong; this was simply too much pain. The doctors were able to make Liz comfortable, and they ran tests to figure out what was wrong. Well, Liz's colon was blocked, or at least too narrow to let anything pass. Because Liz had eaten so little since Sunday, it seemed hard to believe that there could be much that could be blocked, but that was what the doctors decided was the source of most of the pain. Thankfully, Liz has been heavily medicated since.

Emergency surgery had been planned for this evening to fix the blockage, and possibly create another, perhaps permanent, colostomy. At the last minute, the surgery was postponed. After further testing and a couple of alternative treatments (do you really want to know?), the doctor believes there is hope that the colon repair can be salvaged. The doctor says if things continue to look good through tomorrow, he will attempt to perform a more limited surgery by placing a stent in the colon to keep it from collapsing. He wants to try anything before giving up on the reversal and redoing the colostomy. The doctor says there is even a chance that the blockage (narrowing) of the colon may still resolve itself with a little more time. We are hopeful and will know more this time tomorrow.

But, here comes the really gut wrencher -- when they ran all these tests, unbelievably, the doctors also discovered what they believe to be another tumor in Liz's pelvis area. They don't know much yet. More tests will be done tomorrow morning. The doctor does not believe the mass is scarring. As Liz said in her March 8 update, the doctors had just given her a complete pre-surgery review and said she was cancer free. So, what is there now wasn't there even 6 weeks ago. And the mass is too dense, the doctor says. The doctor is convinced it is the cancer, returned, aggressive, and rapidly growing, just as before.

The next few days will be hard. Mark and mother have not slept. My Mom says her heart is breaking. They most of all are devastated, as are all the nearby family and close friends who gather around Liz.

And, of course, Liz most of all, has all these feelings, and is also the one who must endure yet another physical and emotional ordeal.

It's like getting close to the end of the long run, only to find that she must run an unknown distance longer than she thought. She has the spirit to make it through yet another, added, mile. She has already endured more than I think I could ever take. But, she cannot do this without all your help and energy.

So again, we call out to those that Love Liz, as we do. We ask you to send your thoughts, prayers, positive energy this way.

I will try to keep you updated as the week progresses.

And, as Liz would say:

"Thank you for all of your prayers! God Bless."

16-Apr-07 - Liz is home (from Joyce)

Liz came home from the hospital yesterday. Recovery from this surgery is being much more difficult than we imagined. Time is the great healer and as soon as Liz is feeling better I am sure she will send her own update. Your prayers and concern surround her as she heals.



12-Apr-07 - Surgery was successful! (from Joyce)

Liz went into surgery yesterday afternoon (Wed 4/11) around 4:30 p.m. Arizona time as planned. The surgery took about 1 hour 40 minutes. All of our goals were achieved. Dr. Venketesh was able to work out of a small incision about 3 inches long rather than a possible large midline incision. The reversal went well and Liz came out of recovery in great shape. I spent the night with her. She was walking 2 hours after transport to her room. She is hooked up to a PCA which allows her to deliver pain medication when she needs it. That sort of control means everything. She had an amazingly wonderful night; took lots of naps inbetween nursing interruptions for vitals, blood work, etc. My job was to provide ice chips, encouragement, leg rubs, and anything else she needed/wanted. It is an honor to serve her. She has set some pretty lofty goals for today--to walk every 2 hours, get rid of the hose and inflatable garments that prevent blood clots, get rid of the cathater, blow into the triflow ten times every hour and so on. She will do it! Mark and I will exchange shifts over the next while. There is no certain projection for hospital time. It depends upon how quickly her body kicks into action and all systems begin to work again.

Run Liz Run!

10-Apr-07 - Time for the Grand Finale (from Joyce)

This is the week we have been waiting for. Liz’s surgery is scheduled for Wednesday, April 11. We refer to this as the “grand finale” surgery. Due to Liz’s determination to do all she can to support her body at all levels—cellular, mental, emotional, and spiritual—she goes to this surgery in better condition than she has been in a long while. All tests indicate that her body is cancer free, healed and ready for the reversal surgery. Your thoughts and prayers will top it off!

We had a wonderful Easter family gathering. Because I am still healing from a bad fall and fractured rib(s) I asked my family to take over this year and do most of the planning and cooking. They did! Liz and her daughter Jessica, made the famous family potato salad; Alan made baked beans and brought the ham; my granddaughter Breanna, learned how to make the Easter bread as I instructed her on each step. Other family members took over with household preparations and shopping. We used paper plates and plastic wear and everyone is still breathing. It was a hard one for me to let go of control but the results were wonderful. I did not feel tired at the end of the party and was able to spend more time visiting with our group of 35.

Liz reached another milestone this past month. She completed her IRS training in Portland, Oregon and is now a fully trained IRS agent. Her work continues to be a great source of satisfaction and support. Whatever you may think about the IRS they sure know how to take care of their employees and support them during difficult challenges. It has made all the difference for Liz.

My own good news is that I completed my book proposal to the satisfaction of my New York literary agent, sent packets to her last week and we are getting great feedback from the first four publishers who reviewed my project. I better get busy and finish writing the book, a memoir titled “Ceremony of Dying: releasing, remembering, celebrating.”

Enjoy the Easter photos that are posted on the Photo page. Some folks are still a bit surprised to see Liz with a thick head of dark curly hair. I think it is adorable!

Take care and continue to pray for Liz and her family. You make a difference.

Joyce Anne



March 2007 and earlier news updates