Journal History
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Tuesday, January 20, 2004 7:23 PM CST
A NOTE ABOUT MY DAD (KEITH) ABOUT HIS SURGERY:
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My Dad had his bypass yesterday morning.......he had been recommended for a double bypass......(my chest hurt just thinking about it, and it became hard for me to breathe too!)..... After looking things over initially, the mitral valve that they thought was going to need work, did not need anything, but they ended up doing a quadruple bypass instead of double!! He is in the ICU right now and doing ok, but they can't wean him off the vent yet because everytime they raise his head to a 30 degree angle (something they need to do to help the lungs), his BP drops to 70. So, until they can get control of that, he will remain on the vent. My sister in law just called again and said he recognizes them, has winked at a few of them, and has responded to the nurses in regards to needing more pain meds......she said he actually looks pretty good. They went in expecting him to look horrible, and were surprised. The nurses are too.....they said most people look much worse post op. I will wait to hear the next update either later tonight or in the morning after they can evaluate more and see how his BP does.
I am glad this part is over with. I was very anxious about it being so close to my mom's passing. He had a great attitude going into it though, and seems to want this to work so he can keep on getting on with his life. Now we just need to get him recovered so he can do just that. I hope that goes well. I will probably go home to see him for a short wkd in a week or so, when he really can use me more and will be more up to visiting than he is right now. He has a whole slew (sp?) of people around right now....I am the only one NOT there, so it will be better to go later. He is not alone and won't be for awhile.
That's it for now.
Niki
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~~something that a fellow cancer parent will be having read at her young son's funeral.....I thought it appropriate enough to paste to my mom's journal~~
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Down below the surface of a quiet pond lived a little colony of water bugs. They were a happy colony, living far away from the sun. For many months they were very busy, scurrying over the soft mud on the bottom of the pond. They did notice that every once in a while one of their colony seemed to lose interest in going about with its friends. Clinging to the stem of a pond lily, it gradually moved out of sight and was seen no more.
"Look!" said one of the water bugs to another. "One of our colony is climbing up the lily stalk. Where do you suppose she is going?" Up, up, up it went slowly. Even as they watched, the water bug disappeared from sight. Its friends waited and waited but it didn't return. "That's funny!" said one water bug to another. "Wasn't she happy here?" asked a second water bug. "Where do you suppose she went?" wondered a third. No one had the answer. They were greatly puzzled.
Finally one of the water bugs, a leader in the colony, gathered its friends together. "I have an idea. The next one of us who climbs up the lily stalk must promise to come back and tell us where he or she went and why." "We promise," they said solemnly.
One spring day, not long after, the very water bug who had suggested the plan found himself climbing up the lily stalk. Up, up, up, he went. Before he knew what was happening, he had broken through the surface of the water, and fallen onto the broad, green pad above.
When he awoke, he looked about with surprise. He couldn't believe what he saw. A startling change had come to his old body. His movement revealed four silver wings and a long tail. Even as he struggled, he felt an impulse to move his wings. The warmth of the sun soon dried the moisture from the new body. He moved his wings again and suddenly found himself up above the water. He had become a dragonfly.
Swooping and dipping in great curves, he flew through the air. He felt exhilarated in the new atmosphere. By and by, the new dragonfly lighted happily on a lily pad to rest. Then it was that he chanced to look below to the bottom of the pond. Why, he was right above his old friends, the water bugs! There they were, scurrying about, just as he had been doing some time before. Then the dragonfly remembered the promise: "The next one of us who climbs up the lily stalk will come back and tell where he or she went and why."
Without thinking, the dragonfly darted down. Suddenly he hit the surface of the water and bounced away. Now that he was a dragonfly, he could no longer go into the water. "I can't return!" he said in dismay. "At least I tried, but I can't keep my promise. Even if I could go back, not one of the water bugs would know me in my new body. I guess I'll just have to wait until they become dragonflies, too. Then they'll understand what happened to me, and where I went."
And the dragonfly winged off happily into its wonderful world of sun and air!
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I hope that you are off happily flying around too Mom, in the wonderful world of sun and air! We miss you so much down here "below the surface of the pond".
Always,
Niki
Saturday, December 13, 2003 9:29 AM CST
~from Healing After Loss by Martha Whitmore Hickman
Dead and gone though they may be, as we come to understand them in
new ways, it is as though they came to understand us - and through
them we come to undersand ourselves - in new ways too.
~Frederick Buechner
This delicate dance with the souls of the dead is something we don't
begin to understand right away. We think the immediate relationship
is ended, though we know we will continue to remember, and to grieve.
But as we dwell in memory on our experiences with the one who is
physically gone, his other psychic presence, rather than being
confined to the body we knew and loved, seems somehow to expand and
surround us with its gentle understanding, its compassion and love.
So we enter upon different kinds of conversation, often exchanges
without words. We seem to arrive at a mutual understanding and
appreciation for the goodness and the difficulty we were in each
other's life. We're able to smile benevolently at all that flurry
and to relish, instead, the deep love and peace.
Dear departed love, continue to be with me, as I will with you.
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In the spirit of the season of giving, my Dad and I invite anyone who is interested, to make a donation in honor of my mom, to the CaringBridge organization. This will allow more people like her, to carry on communication with their families, friends and loved ones during their times of illness through a web page. Please click on the link below to find out more about Caring Bridge and donation.
We appreciate your continued prayers, thoughts, love and support and wish you all the happiest of holiday seasons.
Niki
Monday, November 3, 2003 6:59 PM CST
Yesterday, November 2, 2003 was the holiday called "Day of the Dead" celebrated in Mexico. An alter was set up and a celebration followed in honor of Mom, and Dad was there to be a part of this occasion. Following my note here are two descriptions of the day provided by two of Mom's friends:
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Everyone,
The Day of the Dead is a wonderful Mexican event -- ofrendas (altars) in private homes with open windows that show them off to the street, in public places, museums, shops, schools, street corners, and even I had them set up in my parents' honor in the nichos in my house.
Angie and Susan Porter also had ofrendas but a big one at the Haas ranch and Folk Art Museum -- hundreds of tourists saw it on their House and Garden Tour yesterday and after that, a group of friends met there for a private party. Maybe fifty people came with food and wine. Haases had bartenders, tamales, chicken, corn, and white tables set up on their lawn that borders the Rio Laja. Jennifer had gone to Patzcuaro for special items -- a candied bottle of tequila, large ornate skulls, candles -- and had collected memories of Angie: small shells, scrabble board pieces, an Ella Fitzgerald CD, lilacs around a photo, a "leaf" necklace that Angie often wore, a glass of wine, and coffee beans, just to name a few. Lots of golden marigolds and purple flowers called patas de elefante. All of this was set up in the Museum, a perfect site, and the party was held a few feet away at their country house. As evening approached, a rainbow came out and everyone thought that meant Angie was there with us.
Keith was sad, touched to see everyone, a little weepy at times, but at the end he was in his hat, sitting around with old friends, and laughing. Being here is good for him, that's obvious.
Sadly enough, when he came to MX, Haases had to tell him that their dog Spot died a few days before Angie did.
A good party for Angie -- I started to cry a couple of times as the sadness would sweep over me in this place that Angie loved but then I'd see a friend of hers with whom I wanted to talk....
Dianne
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Dear Niki, Yesterday we held a memorial/party/altar viewing in honor of your mother. It was a beautiful day and all of her friends came and toasted to her.
It was wonderful for your Dad to see how much love and caring there was ,and of course everyone was so glad to see him. We put wine, coffee beans, faux lilacs and her favorite necklace...and much more on the altar and people brought special momentos...Susan Curra brought your Mom's Chili Cheesecake recipe (from those days of Dr. Atkin's diet) a tennis ball and photos...others brought cookies ...more photos...it was very special and your Dad sat there for a long time and just communed. While we were all socialzing on the porch the most wonderful thing happened....a rainbow appeared...a special omen....to which your Dad raised his glass....as did we all...to the irreplacable Angie...
Love,Jennifer
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Jennifer sent me a photo of the alter, so I have added it to the photo page. I wish I could have been there. I bet it was so beautiful and touching. I will just have to settle for whatever memorial we plan for next year. I just thought you all might like to hear about this special memorial in honor of Mom/Angie.
I know that Dad still checks the website every day to see if anyone has written.......it seems the entries have stopped, but I know how much he, and I, still appreciate hearing from you all. Thanks for all the cards and donations in honor of my mom too.
Take care,
Niki
Thursday, October 16, 2003 3:28 PM CDT
So many feelings.....so many memories......so much loss......such a void.....I'm unable to put a real voice to it all right now....so I will leave you with the lyrics to another song for now......they speak for me at the moment:
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TO WHERE YOU ARE
Who can say for certain
Maybe you're still here
I feel you all around me
Your memories so clear
Deep in the stillness
I can hear you speak
You're still an inspiration
Can it be (?)
That you are mine
Forever love
And you are watching over me from up above
Fly me up to where you are
Beyond the distant star
I wish upon tonight
To see you smile
If only for awhile to know you're there
A breath away's not far
To where you are
Are you gently sleeping
Here inside my dream
And isn't faith believing
All power can't be seen
As my heart holds you
Just one beat away
I cherish all you gave me everyday
'Cause you are mine
Forever love
Watching me from up above
And I believe
That angels breathe
And that love will live on and never leave
Fly me up
To where you are
Beyond the distant star
I wish upon tonight
To see you smile
If only for awhile
To know you're there
A breath away's not far
To where you are
I know you're there
A breath away's not far
To where you are
~written by Richard Marx
~sung by Josh Groban
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We still welcome your thoughts and wishes in the guestbook.....they are so helpful and healing to us all......please don't stop writing.......
Niki
Thursday, October 9, 2003 10:33 AM CDT
Somehow, I feel as if I should enter a new update.....but what does one say at this point? What is there to update now? Mom is no longer here to update on, and yet, the rest of us are all left here with so much sadness and grief. We believe she is free from pain, free from treatment, free from myeloma, but our selfishness wanted her to have all of that here with us. We think about all of the things we can never do again with her, all of the things we want to share with her here, all of the things she gave to us that inspired us all to continue to live our best lives.......and yet, it is just that exact thing that keeps us going, and keeps us thinking of all the good times and memories we have shared. We just need to get over this initial "hurdle" of loss, however long that may take, and then follow her example by living our best lives, just as she did. Some people say that even when your loved ones have gone, you still feel them with you, and that they still communicate with you, if you are listening.....listening with not just your ears and your eyes, but with all of your senses and most importantly, with your heart. I can't tell you how many times she has spoken to me in just a week.
It started with the day she finally let go.....only minutes before she finally passed, I had been out running errands, and was listening to a Van Morrison CD. No reason, it just happened to be the next selection in my holder.....first few songs played and I listened with half an ear.....then came a song that socked me in the gut! I recognized it as the one that I heard my Dad speaking the words to, as we sat by mom's side, the last day I was with her. He spoke a few lines of the words to her, and I thought it sounded familiar and told him it sounded like a song.....he said it was, and that it had significance in thier lives together. I was touched by this, and didn't really give it too much thought again until it played on my CD player that morning.....it was "Have I told you lately?" (see a few lyrics at the end of my note). 20 minutes later after I returned home, I got the phone call from my Dad that I had been expecting, yet really didn't want to hear, that 20 minute prior, she had finally "closed the book on this chapter in her life"........that means, that she had just passed when I heard this song......I took this to be her message to me, and to all of us, that she was letting us know that she wanted us to know that she loved us.....that although she was leaving, that would never change. I felt peace in that explanation.
The next day, I found another communication from her.....this time in my email in box. I am signed up to Travelocity for occasional updates on my favorite destinations when they have price reductions. One of them showed up in my box that morning, and it was a price reduction for Athens, Greece.....the one place Mom wanted so badly to go back to over the past several years. We had decided that the two of us and her sister Maria were going to try to make that trip together as soon as we could make it work.....of course, Mom's illness, and my own son's medical issues were making it difficult to make that happen, but it was still fun to talk about and dream about and plan for "some day"......well, when I got that price update in my box that morning, I took that as her message saying, "Ok, I'm finally on my way, so get yourself booked too, and we'll meet when you get there!" I know these things are easily coincidence, but I chose to see them as signs of her presence and communication. When we were in Spokane, Wa. recently, I was surprised to find out that it is considered the "Lilac city" and that they have Lilac festivals every spring......I got so choked up hearing that, but once again, felt that it was my Mom talking to me somehow....perhaps saying to me "what a great place to relocate!" It certainly would be a great way to keep her memory alive being surrounded by all those lilacs every spring.....and it would give me a great opportunity to carry on her "tradition" of "liberating lilacs"!! There are so many little things that make me feel like she is still here, still reaching out, still sharing herself with us.
I have found so much comfort in all the words of support and memories you all have shared with me. There is this whole other person that she was with all of you, that I didn't know the way you do, and I really enjoy getting to know her in that way. I really hope you will continue to share the Angie you knew with me.....I'd like to save it and put it together in some way to share as well as re-read myself. So, for those of you who were blessed enough to know her, tell me about her. Tell me what she meant to you, and how she impacted your lives, and perhaps even funny or touching stories and experiences you may have had with her. I want to share it with my boys someday, I want to share it all with you too.....I think it will help us keep her spirit alive as the days, weeks, months and years go by.....I think we all benefit from keeping that spirit alive and ever-present.
Thanks for letting me express myself here.....and thanks again for sharing your feelings as well. This is not a loss for just one or two or a few, but a great loss to MANY!!! and a huge loss to those who never got the chance to know her........every day is different in this grief process....Tuesday's 1 week anniversary was extremely hard.....today just happens to be starting off as a better day.....hope it is for you too.
All the best to you all as we muddle through this together!
Warmly,
Niki
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a few of the lyrics from:
"Have I told you lately?"
by Van Morrison
Have I told you lately that I love you
Have I told you there's no one else above you
Fill my heart with gladness
take away all my sadness
ease my troubles that's what you do
For the morning sun in all it's glory
greets the day with hope and comfort too
You fill my life with laughter
and somehow you make it better
ease my troubles that's what you do
There's a love that's divine
and it's yours and it's mine like the sun
And at the end of the day
we should give thanks and pray
to the one, to the one
Have I told you lately that I love you
Have I told you there's no one else above you
Fill my heart with gladness
take away all my sadness
ease my troubles that's what you do
Tuesday, September 30, 2003 1:55 PM CDT
I'M GLAD YOU'RE IN MY DASH
I read of a man who stood to speak
At the funeral of a friend
He referred to the dates on her tombstone
From the beginning.......to the end.
He noted that first came her date of birth
And spoke the following date with tears,
But he said what mattered most of all
Was the dash between those years. (1939-2003)
For that dash represents all the time
That she spent alive on earth....
And now only those who loved her
Know what that little line is worth.
For it matters not, how much we own;
The cars....the house....the cash,
What matters is how we live and love
And how we spend our dash.
So think about this long and hard....
Are there things you'd like to change?
For you never know how much time is left,
That can still be rearranged.
If we could just slow down enough
To consider what's true and real,
And always try to understand
The way other people feel.
And be less quick to anger,
And show apreciation more
And love the people in our lives
Like we've never loved before.
If we treat each other with respect,
And more often wear a smile
Remembering that this special dash
Might only last a little while.
So, when your eulogy's being read
With your life's actions to rehash.....
Would you be proud of the things they say
About how you spent your dash?
~Author unknown
Saturday, September 27, 2003 3:53 PM CDT
** UPDATE 9/30/03 **
Really nothing new to report except to say that the end is very near.....her spirit and the essence of who she is/was have slipped away, and now we just wait for the body to follow .....she is no longer in communication with us, and does not seem to be uncomfortable or in pain.....that is certainly a relief to all of us. I'm sorry to have to post this all on here, but I know how many of you are checking in and wondering and worrying......sometimes it is just good to know what is going on, even if it is not necessarily good. I will update again soon. Thank you all again, so much, for everything!!
~~Niki
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Ok, so here's the latest news. Unfortunately, it's not the best of news. Mom's condition is degenerating pretty quickly now. Her oncologist felt Mom's body was too weak to withstand the continued treatment, but left the final decision up to Mom about what she wanted to do. Even if they continued treatment, the odds of it helping her at this point were minimal. This myeloma has become so aggressive, it has taken over her lungs, liver, spleen and of course, the tumor in her abdomen. Things have gotten to a point where even tapping her lungs now is not giving her the relief it once did. She has thrush in her mouth so bad that it makes it difficult to eat, drink or talk, but she swishes with a special concoction that includes lidocaine to help numb her tongue and lips. I think she is more interested now in just being comfortable and making the best of the time she has left. She came home from the hospital yesterday afternoon and hospice is now involved in her care. They delivered a hospital bed and that is very comfortable for her. She slept like a baby last night she said. She perks up with all the visitors, and still has many good, clear headed converstations. She still has a feistiness about her too, not letting any time pass without a little humor. But then, that's her. Always trying to find some way to lighten things up and not be so serious about all this......so, I guess we'll try to do the same. Until next time, I hope you all hang in there with us on this roller coaster ride. Thanks for all your continued love, support and prayers. We'll be in touch........
Niki, Keith, Paul, David and De
Wednesday, September 17, 2003 8:26 PM CDT
** UPDATE 9-24-03 **
Just wanted to update the latest...Mom (Angie) was admitted to the hospital last night due to difficulty breathing again. They wanted to tap her lungs to drain the fluid, but she wanted to rest and be left alone until today. They are draining the fluid from her lungs now, and then will put in a more permanant type catheter in both sides of her chest/lungs tomorrow so that they can drain the fluid as needed without tapping her each time. They also did an MRI of her brain this morning because of the recent confusion and disorientation. They fear that the myeloma has moved into the brain. If this is true, then they feel there is probably no point in continuing any more treatment. The doc is also waiting for a comparison between the CT scan of her chest and abdomen on Mon to the previous scans. We will have more news this afternoon and I will update as soon as I can. ~~Niki
** 2nd update: 9-24-03 9pm **
Well, big pleasant surprise........no myeloma in the brain! I am actually pretty shocked. As to the confusion, etc.?? could just be the lack of oxygen, or still some effect from the meds even though they have been cut back so much.....not sure.
Anyway, she had her tap this afternoon, and she is back to feeling so much better again.....geez! what a roller coaster this fluid causes! After her doc talked to the specialist here in Omaha, he says he is puzzled about what is best because, of all the myeloma pts he has treated, none have ever been this aggressive. He thought adding another chemo with the velcade might help if she still wants to keep treatment going. She is to have a catheter placed tomorrow in the right lung to drain fluid prn without having to do the needle aspiration each time. She should be ready to go home Fri, and I think the next velcade round begins Sat if she wants to continue. Big talks on Fri I guess to decide what she wants. I am driving back once again to see her/them....leaving Fri morning and returning Sun morning.....quick, but last chance for awhile.......Will update again when I have any other news. ~~ Niki
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Greetings again,
A lot sure does happen in 10 days! It has definitely been an emotional roller coaster the past week or so. As most of you know, things became pretty grim for Angie after I last wrote. For various reasons, her condition deteriorated quite a bit. While she was still in the hospital, she was having great difficulty breathing. They checked a chest xray and found fluid in her lungs. They drained the fluid which gave her immediate relief and then sent the fluid off to be tested. She also had a CT scan of her lungs and abdomen which showed that she had nodules in the lungs and liver. The lab results on the fluid they collected showed myeloma had invaded the lungs. It was assumed it was also in the liver. She did go home on Mon. night but was in really bad shape. Things were getting so bad I thought it was time to drive out for a visit, unsure if it would be my last one with her. I left on Wed the 10th and stayed through the 15th. Even in the five days I was there, there were many changes. When I arrived, she was quite weak, her legs were extremely swollen (lymphedema), she was not eating or drinking much and she was virtually immobile. Moving from bed to wheelchair or w/c to chair, etc. was difficult work. She was having difficulty breathing, and it worsened even in the time I was there. She went from being on 2 liters of oxygen to 3 liters in less than 24 hrs. On Saturday the 13th, she went to the hospital to check labs and get her third dose of velcade (new chemo to hopefully put her into remission). While she was there, we insisted that she get a chest xray to see if there had been fluid build up again. This time it showed BOTH lungs were full of fluid so her doctor wanted to admit her to have them drained and keep a close eye on her. They drained the right lung this time and she was immediately feeling better. Saturday evening she was a different person!! With some changes in her pain meds, the drainage of fluid in her lungs, transfusions of platelets and blood and lots of lasix and another diuretic, she was the Angie we all knew again! At this time, they will hold off on draining the other lung unless she begins to have symptoms that require it.
Fast forward to today, she was discharged to go home again. She is getting nupogen to increase her white cell production, procrit to boost her red blood cell production, physical therapy to get her up and moving again, special pressurized leg stockings to help take away the swelling and pressure that the tumor is putting on her legs, she is still breathing much better (even with the left lung still filled with fluid) and her appetite is back as well! She is set up to have nursing visits at home for labs, etc. She received her last dose of velcade for this round yesterday and now she has 10 days of rest. Just before they start up the next round, they will do another MRI of the chest, abdomen and pelvis to check the status of her tumor and the nodules in her lungs and liver.
Her doctor has mentioned that this myeloma has never acted like a typical myeloma. She said in some ways it is behaving more like a leukemic process. She is conferring with the specialist in Omaha who did Mom's transplant to see what his thoughts are on the subject and to see if she might benefit from another chemo (cytoxin) along with the velcade. We haven't heard anything yet, but if we do, we will let you know what they come up with.
Some of Mom's childhood friends, (Betty, Connie, Dianne and Mary) who had a visit planned prior to all of these complications, were in town to see her while I was there as well. I know that this visit meant so much to her and she was so happy to see them. I know it was difficult for them to see her like this, and I wish they could have seen the huge changes that took place shortly after they left. I realize that this latest "good news" may not be long lived, but we are all certainly grateful to have her feeling better and being a little bit more like herself. The future is so uncertain for her in this disease, but this most recent turn once again gives hope that perhaps a chance at remission is possible. Regardless of how much time she may have left here with us, I just hope it has her as comfortable as possible. I am so grateful to have had the time to spend with her that I did, and I hope that it wasn't the last.
As I got in my car and drove away from the hospital on Monday morning, there was a song all ready to play on my CD that pretty much summed up the message I am sure my mom would want everyone to embrace, regardless of her current situation or not. I thought the timing was pretty ironic but very fitting. Here are a few of the lyrics:
People hear me when I say
No one knows the hour or day
When everything could change
Cherish every moment of your life
Don't let the days of good and bad just pass you by
And cherish every moment you're together
'Cause you will never know
When your days are gone.
Hold on to the ones you love
They're gone within the twinkling of an eye
People hear me when I say
No one knows the hour or day
Be prepared to live your way
When everything could change
Cherish every moment of your life
Don't let the days of good and bad just pass you by
And cherish every moment you're together
'Cause you will never know
When your days are gone.
(from part of a song called "Cherish" written by Dana Glover)
Thank you for the outpouring of love and support and phone calls to me and to Mom and Dad during this part of the roller coaster ride. I'd also like to write a special thank you to David and De, who are extraordinary people giving so much of themselves to support and help Mom and Dad during this time. The road would surely be much more difficult if not for them!
Wishing for many more wonderful days ahead,
Niki
P.S. I've added some new recent photos to the website.
Friday, September 5, 2003 1:48 PM CDT
Greetings everyone,
I have delayed this writing long enough......I said I would do it yesterday as soon as I got off the phone, but as life happens to get in the way, I didn't get it done. I also admit to holding off because I was full of both anger and emotion. I've had some time to think, cool off, calm down, and talk to mom's doc myself, so I think I am better able to write this now. I am actually going to "cheat" and use part of a conversation written to me by mom's friend Dianne.....it pretty much sums up what has been going on in the last few wks and days:
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(per her conversation with Keith/Dad)
they've had a traumatic couple of weeks but yesterday Angie was unable to walk, terribly short of breath, pain in her leg (the tumor in her abdomen/pelvis is still growing and putting pressure on the femoral nerve), and the thalidomide and radiation have not worked. She went to the hospital to be "built up" -- platelets, blood transfusions, etc. (her platelets were 11K, and WBC 2K) -- and today her cheeks are rosy. As a result of the prolonged steroid treatment, they THINK she might be in congestive heart failure so are giving her diuretics. The last few weeks she has been so short of breath that she had to sit up much of the time resulting in sleeplessness and fatigue. They're trying to get things under control by being in the hospital but the myeloma has gone crazy -- undaunted by the treatment. Her MRI of yesterday showed that the tumor in the pelvic area is larger and her blood count was terrible. Once she's stabilized, they'll start a new drug called Velcade.
He then said that this is the last station on the line, they both know it, it's not the script they wanted but the one that happened.
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Ok, I've been told that the prognosis is poor, however, this new drug supposedly has had good success with myeloma treatment, EVEN in patients who have had multiple other treatments already. The chance of remission/survival with this drug is 50Not great numbers, I know, BUT, if they do nothing else, there is no survival. So, 50s sounding better already, isn't it?? When I talk to them both, the conversation is pretty typical. Just the facts, real as they are, with Dad. With Mom, "oh everything is ok now"......like Dianne said to me, "her voice was strong, saying she's so much better today" and "You would have thought she had the flu -- nothing more serious than that." When I got on the phone with her, I kidded her saying, "I thought you were kicking this thing in the butt!!".......her typical, humerous response was, " I thought I was too, but it's kicking back!" I know this isn't "what they signed up for", but despite the bad news and grimness of it all, she still has a good attitude and is telling ME "not to worry". Yea, right Mom! She got a new picc line yesterday since she has no veins left and she had an echocardiogram as well to check her heart. Her kidneys and liver are still in good working order. No results as of last night on the echo. I've tried to reach them today and she is not in her room, and there is no answer on cell phone or home phone, so I don't have todays news.
I really was very angry yesterday about this.....well, actually just angry at cancer in general. I wanted to punch something......for every child that's ever been touched by it, for every parent who goes through it, for EVERY person ever touched by it, IT STINKS!!! (not what I really want to say!) I was also very upset by this too. It throws you into that thought process of all the what ifs........but, after having talked to Mom's doctor last night, I feel a tad bit more hope that this isn't the end yet. Nobody is giving up yet, so neither will I. I know she and Dad will appreciate your notes (in the guestbook or by email) or calls. All prayers appreciated!
Ever the optimist, even in the face of grim reality,
Niki
Friday, August 29, 2003 12:31 AM CDT
Sorry for the long space between updates but have been in therapuetic limbo for about ten days. Saw the oncologist the 6th of Aug. Angie's pelvic plasmacytoma had become so symptomatic she felt it necessary to suppliment the thalidomide with irradiation. Next day started treatment for a sceduled twenty five. The 20th, because of increasing tremor, neuritis, and muscle weakness, Thalidomide was stopped for a week,, and routine CBC indicated the blood count had gone into free fall with a platelet count of only 53K [normal is 150 to 300K], WBC down to 2200 and Hbg only 9. So irradiation was stopped due to CBC supression, and Procrit given. Labs the 22nd up a bit but platelets down to 35. The 25th felt terrible, right leg edematous, and Labs not improved. By Wed. the 27th [our wedding anniversary] she had endured eighteeen hour of nausea and v. Needed 1500 cc of fluids, antinauseant, and steroid. Now doing better and back on meds but platelets still too low to resume irradiation. On the upside the last M-protein [Myeloma protein] was the lowest since all this began so the thalidomide must be working. So much for now will try to be more current in the future. Thanks for all your letters truly appreciated. A&K
Friday, August 1, 2003 8:39 AM CDT
ADDENDUM: Aug. 7th.
It's been a busy week so a lot more has been added to the med. mix. On Tuesday Angie had her consult with the radiological oncologist. He was insistant now is the time to hit the pelvic mass with irradiation. Today she had the first of of twenty five daily teatments. It's obvious there will be some unwanted reaction but the prospect of relief of pain is truly worth the the exposure. She will continue the thalidomide protocol. It is certain that the immediate future is going to be involved with docs, meds and linear accelerators. We hope all goes gentle and effective. On we go, A&K
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Welcome y’all,
It’s time for an update and a substitute. Angie is not comfortable at the computer for long stretches so I will fill you in on the latest. A lot has happened to her since the MRI showed a rather disturbing plasmacytoma occupying a good portion of the right pelvic space. Because of the recurrence and still normal labs, it was felt necessary to do a biopsy of the mass. This was done by Cat scan direction without complication but revealed the tumor to be myeloma, as expected. It was discovered to be just one mass, not two. Angie has been having increasing right pelvic and leg pain and needed to be back on morphine. She was started on Thalidomide 3 weeks ago in conjunction with four days on and four off of Decadron. This combo is supposed to be quite useful in bring on a remission in cases that have relapsed.
She is due next week for a consult with a radiological oncologist. The reason being that Xray might speed up resolution of the pelvic mass. As one might imagine all this has been quite confusing and the heavy doses of meds [thalidomide was once used as a tranquilizer] my best friend does have a little problem with concentration. She is temporarily grounded from driving until we see how this all shakes out. How much time will be indicated for this protocol is somewhat uncertain depending on how well the tumor responds. On the good news side there are some new therapeutic agents coming available. One, Revimid, was just approved in May by the FDA and the other, Valcade is on fast track for approval. They both work in the same way as thalidomide but with less side effects and probably more effective. Obviously the challenge is to have patience to watch for new therapies to come over the horizon.
In the meantime, we have been enjoying Niki and the boys, who are on a Colorado whirlwind vacation. It is so great to see Eric who is such a fine young man and so patient with his wired little brother, and we do mean wired. But, Brian is the star this time around as he is eating! None of us who have followed his progress these last 7 years can believe what we see, but the feeding clinic in Virginia seems to have accomplished that monumental task of teaching him how to chew and swallow....no small task for one who has been on a pump of liquid food all these years.
I asked on awakening the other morning how she felt, and her answer was “tranquil. That will give you some idea about the effect of high doses of Thalidomide. She definitely gets lots of rest, but longs for some physical activity, which at the moment is limited. Even her yoga has suffered. Perhaps the hope of wiping out the plasmacytoma with radiation will present us with a quicker answer and allow her to get on with the business of living.
We hope this catches up with the currant status and should have more info in the near future. Do drop a note on the web site. Right now everyone’s support is helpful.
Thanks A&K
Thursday, July 3, 2003 9:34 AM CDT
Dear Friends....Our visit to South Carolina was one of those glorious experiences that you really shouldn’t talk about in detail.....it generates too much envy! I will say that we reconnected with best friends, explored a new part of the south and returned to a special island we call our Eleusian Fields........How lucky for us we had that carefree time.
Now we are faced again with doing battle against an old foe. The myeloma has come back. Dr. Medgyesy said Saturday’s MRI showed two plasmacytomas (soft tumors) one 4" in diameter and one 2". They are inoperable. We begin treatment Monday. Since radiation or chemo are not options, we will begin a protocol of thalidomide and dexamethasone (steroid) taken orally for a period of 3 months. This proposal has shown good results for those at my stage of the disease.. This cancer has not followed the usual progress. My labs are not showing any significant change, which under most circumstances would be the first indication that I had relapsed. X-rays have also failed to show any sign of the myeloma returning. It appears that MRI’s will have to be the method for diagnosing progress.
The pain I’ve been experiencing over the last 6 weeks has increased in intensity to where morphine is my only relief. Once the tumors start shrinking, the pain should dissipate. Keith and I are devastated by this turn of events. We have always been aware that myeloma was an incurable cancer, but we were hoping that the chemotherapy and following transplant would slow down the growth and give me more remission time. We were told of a newly approved drug for treatment of myeloma that shows great promise. This might at some point be appropriate for my case.
We will keep you all posted......A n' K
Tuesday, May 27, 2003 5:37 PM CDT
Hello Everyone....I just got a call from my Oncologist and the xray shows no change in the lesions in the right hip and the blood work came back negative so I can breath again and just assume the pain will eventually dissipate. That is such great news!! If I'm still having pain after we return from our trip to Edisto Island, S.C., I will deal with it then.
We are looking forward to spending time with our friends at their beach house; shelling, swimming and looking for fossils. We can't wait!!! We will return to Colorado on the 15th.
Summer is here! Lets make the best of it!!!!
Hugs....Angie
Thursday, May 22, 2003 10:08 AM CDT
Ok everyone, here goes: I am in pain....same as before only on the right side. I ignored it for a while, took pain pills and then decided to tell my doctor. She ordered an xray on Monday, they drew labs yesterday and now we are waiting for results. It is not likely that the myeloma has resurfaced, but before we leave for our trip to South Carolina next Wednesday, it would be nice to rule it out. I never thought that "living" with cancer would be so difficult. Remission means no activity and yet its hard not to react to certain symtoms. I was so confident with the results of the transplant. I was told by the team that the French tests showed 50 f the participants in the study were still in remission after 7 years. Of course, I signed up for that!
I have plans: tests in Omaha in August, Trey and Kelly;s wedding in September and my school chum's gathering in Spearfish right after that. We also intend to leave for San Miguel in October and stay for the winter. I don't have time for a setback, so I will assume its something else. I will think positive until I'm told otherwise. Also, I will update this as soon as I hear something.
Hated to reveal all this, but Keith said stalling was unrealistic.
For all of you who have been with me for the last year, I want you to know that I am at it again. Its lilac season here and I have committed that crime of liberating them from the neighborhood bushes. What was I to do? They hit me in the face as I walked by, so I selectively pruned them. Its time for fresh ones so I will go for an easy walk and see what I can bring home. There is a new variety with varigated blooms that I especially like. Hee Hee.
I will be in touch soon....hugs to you all.....A
Tuesday, May 20, 2003 10:29 AM CDT
Hi Everybody....I'm working on an update, so stay tuned.....Angie
Friday, April 11, 2003 8:45 PM CDT
DEAR FRIENDS…….
I HAVE BEEN OUTSIDE RAKING THE PONDEROSA PINE NEEEDLES AND PINE CONES FROM THE YARD AND MUST TELL YOU IT FELT QUITE GOOD. I HAVEN'T DONE THAT IN SOME TIME AND DISCOVERED IT IS SOMETHING ONE NEVER FORGETS HOW TO DO. THE TEMPS HAVE BEEN IN THE MID 70'S AND THERE ARE STILL MASSIVE SNOW BANKS IN SPOTS THROUGHTOUT THE NEIGHBORHOOD. AAAAH….SPRINGTIME IN THE ROCKIES.
MY VISIT TO DR. MEDGESEY THIS MORNING BOUGHT SOME RELIEF FROM THE POSSIBLE DIAGNOSIS OF LUPUS. IT'S JUST A REACTION TO THE STEROIDS AND NOTHING MORE. ONE OF THE TESTS SHOWED A SLIGHT SPIKE IN M-PROTIENS, BUT IT WAS SUCH A SMALL NUMBER (.9)THAT SHE SEES ME AS STILL IN REMISSION. NO EXPLANATION FOR THE SPIKE. I AM FREE FROM DOCTORS VISITS UNTIL MID AUGUST, WHEN I GO BACK TO OMAHA FOR MY YEAR POST-TRANSPLANT WORKUP. I WON'T BORE YOU WITH THE LITANY OF COMPLAINTS THAT FOLLOW CHEMO…. IT GOES WITH THE TERRITORY AND IT COULD BE WORSE….BESIDES, I SAVE ALL MY COMPLAINING FOR THE DOCTOR.
SPEAKING OF THE DOCTOR, KEITH IS SUFFERING FROM TENDONITIS IN HIS LEFT THUMB AND WEARING A HAND BRACE, BUT IT HASN'T SLOWED HIM DOWN. HE IS HARD AT WORK DOING THE WIRING, OF COURSE, IN THE DOWNSTAIRS REMODEL. HE AND DAVID ARE BONDING INTO A CONTRUCTION COMBO…IT'S A BIT LIKE TOOL TIME, WITHOUT THE PLAID FLANNEL SHIRTS ! KEITH CONFESSES HE IS HAVING FUN.
I AM TAKING A MOUNTAIN HIKE TOMORROW TO SEE THE WILDFLOWERS…ITS ABOUT TIME I GOT BACK ON THE TRAIL. AGAIN, THANKS TO ALL OF YOU WHO HELPED ME GET TO THIS POINT THRU YOUR MESSAGES OF ENCOURAGEMENT AND SUPPORT.
….JUST HEARD SOMEONE REFER TO SAN MIGUEL AS SUMMER CAMP WITH COCKTAILS!
ALL FOR NOW FROM THE GANG ON SPINNAKER LANE…..ANGIE AND COMPANY
ON A PERSONAL NOTE: RON, COURAGE…
Tuesday, March 25, 2003 9:06 AM CST
Ojala and Hola to all you "faithfuls" who keep checking in on the continuing story of Angie and Keith!
We have returned to a winter wonderland….choosing our arrival date carefully so we could make it through mountains of snow to our driveway. It meant spending an extra day with John and Betty in Santa Fe, but how bad could that be? We had an easy and uneventful crossing into Laredo on Saturday after a not too unpleasant day thru Mexico. Thanks to Bob and Jenny for loaning us Tourist Season by Carl Hiaasin to listen to ALL the way home .(12 CDs worth) . Our next stop was Alpine Texas with hopes of visiting the MCDonald Observatory. Missed the opportunity to attend the Saturday night star party, but will make it July when we drive down again. A very pleasant stay with Armstrongs in Las Cruces, as usual, a real respite from the road. Funny how the week that we needed to get to Fort Collins presented us with the biggest blizzard in 90 years!!! The moisture will be welcome and from forecasts it looks like another snow is due Wednesday. Lets hope the sun and warm temps will dissipate some of these major snow banks before the next dumping.
With all that's going on, I have some good news to share with you….gleanings from the latest issue of UTNE…."The rise(sorry) of Viagra as an alternative to exotic aphrodisiacs may be having a measurable effecton the survival of certain endangered animals. According to THE ECONOMIST (Nov.16,2002) the harvest of harp seal penises and hooded seal penises, once prized for their alleged ability to stiffen a man's resolve(sorry again)has plummeted since 1998 when Viagra first became available. The harp seal harvest between 1998 and 2000 dropped to less tthan 100,000 from 250,000, and only 10 hooded seals were killed in that same period." Another hooray for modern science!
Our hearts are happy to be "home" and heavy to be at war. I wish we could have worked this out differently as I'm sure does everybody else. Just before we left, we had comida with Marisela and Jessica. Jessica was back in San Miguel, her birthplace, after having lived in New York City for the last two years. She survived 911. Her job was with the Mexican Chamber of Commerce on the third floor of the world trade center and she was trying to get to work when the planes had hit the buildings. She said she still can't get the images of people jumping out the upper windows or the collapse of the towers. She had to run for her life. She tried very hard to get on with her life, but she said the tragedy stayed with all New Yorkers...even if they didn't talk about it. Finally,at the urging of her Mom and Dad, she left NYC for the comfort of a quiet Mexican town. She arrived a few days before we did and admitted that her mom's suggestion of studying guitar and taking ceramics at her aunt Blanca's studio was the best solution for healing. She and her father Don planned an adventure by way of a 7 day float trip down the Usumacinta river. This remote river divides Mexico and Guatemala and passes by one of the most unique archeological sites in Mayan civilization…Yachilan. Her father spent many years working at the site as an archeologist so it would also be an opportunity to show her around. Keith and I took this trip in May of 1991 with Don and friend Steve as trip guides. We count this as one of our most memorable experiences. The war was still going on in Guatemala, so we were not able to explore that side of the river, (too many encounters with gueriellas) but it didn't take away from the indescribable beauty of the river and its jungle surroundings. We told Jessica before she left that this would be just what she needed to reconnect with nature and the natural beauty of her homeland…yet she had to undergo another tragedy…a friend from San Miguel went exploring around the camp site, one with incredible cascdes, and got caught in a whirlpool and drowned. A devastating loss. At her young age she has experienced death with an intensity that most of us don't have to face. Even at play we are vulnerable. Back to the human condition and how little control we have over our lives….so hug each other and count every minute as precious.
On the health front, I went in for my infusion yesterday, saw my doctor and she is running labs to rule out Lupus. She assured me that my symptons were probably reactions to the steroids, but we will know for sure after the 10th. Its always something huh?
We feel well and are getting used to being in a place where we have "access to excess"
Please sign in with your latest news and we will keep you posted on ours. Ciao, A n' K
PS...For all you "six Feet Under" fans....didn't Sunday's episode just bring tears to your eyes? All of us want things to be good and lasting.
Thursday, March 6, 2003 4:30 PM CST
Dearest Ones,
Its been 3 weeks since my last confession/update, and since then I’ve played lots of Scrabble, drunk lots of good wine, eaten wonderful food, read interesting books, spent time with fabulous people and felt a sense of well being that has eluded us for some 18 months.
I realize the clear blue sky, sunlight filtered thru the cedar trees and warm temps contribute to that contented feeling, BUT….there is something about being back here that is magic for us. For the 35 years that we have been together, more than half of that time has been spent in Mexico…..oh the places we have been!!!!
It does reinforce our decision made many years ago that time was more valuable than money….
Pat and Jerry Kochansky, the couple from New York City who bought Casa Sutton last February came out to visit Tuesday afternoon. It was such a pleasure to get to know them better. A year ago we were so very sick we just had time to meet in the lawyers office, draw up the contract, go to Casa Haas for a celebratory champagne and fly out the next day! How rewarding it was to hear they love the house as much as we did and appreciated all we did to make it special. As they were leaving, Jerry told me that thanks to Pat, he took an early retirement from the New York City Fire Department on September 1, 2001. He could have died in the rubble of the WTC, but instead he is blessed with a beautiful house and a wonderful lifestyle in San Miguel de Allende, Guanajuato, Mexico.
Proof that so many of us and our loved ones come close to death everyday….some of us luckier in the outcome than others, but we must realize the importance of NOW and how we are all in this human experiment together. We can only hope for an end to human suffering. A great Hindu sage said: “You can’t buy peace, you must learn how to manufacture it from within”. There you go, our first assignment, if we choose to take it, is to work on ourselves.
Just finished reading Bryan Sykes new book SEVEN DAUGHTERS OF EVE….all about Mitochondrial DNA and how every one of us descends from one of those 7 strands….amazing stuff. Since the sat-dish got connected, my reading has slowed down a bit….I am still savoring ONE RIVER by Wade Davis…his memoir of exploring the Amazon Basin for new plants….basically following in the footsteps of his professor, Richard Evans Schultes, the Harvard ethnobotonist who spent 12 years searching the same places during the 40s and 50s….studying indigenous cultures and their use of medicinal plants unknown to the modern world. Now these plant are commonly used in medicine saving lives. Imagine the thrill of that! Keith is currently enjoying Simon Winchester’s MAP THAT CHANGED THE WORLD (for all you work freaks, he wrote THE PROFESSOR AND THE MADMAN….all about putting together the Oxford Dictionary….great read. Sounds so intellectual doesn’t it? I think its time for a good trashy novel….suggestions anyone?
We have decided to attend a huge fiesta on Saturday given by good friends (because of my compromised immune system, I have avoided large crowds so this will be a test…..everyone we know and everyone we don’t know will be there!) …it will be a bit of a grand finale of our stay in SMA. Next week we start packing and tying up loose ends before the trek North. We’ll sadly return Spot to her foster parents, Uncle Bob and Aunt Jenny at Rancho Jaguar, will close down the Cottage and load up Vera Cruzer. Our ETD is set for the 15th and we will try to see Mike and Shirley in Las Cruces (will you be home?) and Betty and John in Santa Fe (will you be home?) and arrive in Fort Collins by the 21st. David made me promise to get his Dad home for his birthday on the 22nd….got something very special planned. DAVID? Will you make me an appointment at Medgyesy’s office (212-7600) for the last week of March? Need office visit with her, labwork and Zometa infusion…..muchas gracias. Also get those DVDs ready for our viewing pleasure….heard that CRIMES OF PADRE AMARO is good and TALK TO HER is almost as good as ALL ABOUT MY MOTHER and don’t forget FAR FROM HEAVEN…I really like Diane Lane.
Don’t know if I’ll get in another update before leaving, so thanks to you all for staying in touch and making us feel so loved.
Ooh Blah Di…....A n’ K
n n' t....such a nice visit....
Wednesday, February 19, 2003 12:26 AM CST
** CHECK OUT NEW PHOTOS! **
Buenos Dias Amigos!
Just returned from a breakfast of chilequiles and huevos rancheros at El Pegasu, feeling like we are truly back in the swing of things. We are currently housesitting for Los Haas. Jenny is in Guatemala and Bob slipped off to the Hot River for a couple of days so we are looking after casa, cats and dogs until tomorrow. Hence the availablity of a computer. Not sure we will have time to pick up our computer and get connected before we leave, so we will continue to communicate with a little help from our friends.
Our dog Spot is doing fairly well after her accident with the barbed wire....its still questionable if the reattachment of the tip of the nose will be a "take" We will watch her closely and continue to give her antibiotics and hope for the best....the Vet is optomistic. Bob and Jenny have taken such good care of her for the last year, its unbelievable that the day we pick her up she has this injury...."eso es la vida" as they say.
We have visited with all our dear friends since arriving and have accomplished quite a bit of our "to-do" list. We have also spent some quality time in the hammock catching up on our reading. The trip down, via Las Vegas, was long enough to get us thinking about all the things we wanted to get done when we arrived, so we hit the ground running. The first week we were like obsessed agents on a mission. We have gradually slowed down....hence the time spent visiting and reading. We still feel good, and are amazed at our energy level...our neighbors the Swanns have graciously offered the use of their natural hot springs bathhouse for long and relaxing soaks. You can't believe how fabulous and luxurious that has been...taking the healing waters.
The weather of course is marvelous...we are entering spring and the growing season has begun in earnest. February 2nd sort of kicks it off officially by having a huge sale of plants and flowers in Parque Juarez. It lasts a full week and the colors are spectacular. We too, paid a visit to Candelaria for a few geraniums, herbs and calla lillies. Even tho we are only here till mid March, we couldn't resist the urge to garden. We will get back to Fort Collins in time to begin the process anew.
As to the changes we have found on our return to what had been our home for the last twenty years....nothing has changed much among the Mexican population, but the number of North Americans in town has increased by leaps and bounds. Could it have something to do with the weather in the midwest and northeast? Can't blame anyone for trying to escape harsh winters.....Oh yes, the traffic has also increased....but where hasn't it? And almost everyone to a man is grousing about politics and the possibility of war.
In spite of the above, we are happy, content, and so far, glad to be back. We appreciate all the signings of the guestbook....had begun to wonder if anyone was reading the Greeklady's website anymore....you're hanging in there with us, bless you all.
Hasta el proximo,
besos y abrazos,
A n' K
Thursday, February 6, 2003 11:17 AM CST
Hello friends and family,
This is just a quick note to let you know that Mom and Dad are safe and sound in Mexico. They are getting unpacked (slowly, since they don't really have enough space to put everything) and getting settled. They are reconnecting with their "family" down there and the weather, of course, is wonderful. That makes it easier to feel good!! They finally hooked up with Spot again and they are so happy to see her. However, a day or two before they arrived, Spot got her nose tangled up in some barbed wire and is in need of some vet care.......regardless, Spot seems VERY happy to see them again as well. They DO have their phone again, but the connection has been off and on. Sometimes they are only able to call out, but Mom is calling the phone company to try and get it fixed to receive calls as well. If you don't have their number in the country, please email me and I will send it to you (ndaubach@cox.net).
They do not know when they will have computer access, but if you leave messages for them on the webpage guestbook, they will at least have them when they do get back online.
I guess that's it for now. If there is anything else, I will update for them again.
Take care.
Niki
Saturday, January 18, 2003 at 09:01 PM (CST)
Dear Friends,
Time has come for Keith and Angie's great adventure….leaving the nest so to speak and heading off into the sun. After this long year of uncertainty, insecurity and medical concerns, we are released from all that and look forward to being free and on our own for a bit.
We leave, by car, tomorrow for a little fun and games in sin city…..plan to spend the week with my brother Dick and his wife Diane. Then we will meet up with Bob and Jenny Haas from San Miguel on the 25th , also in Vegas to celebrate his 60th birthday. Won't that be a kick? What a change in direction for us…..it should be lots of fun. Dick and Diane work for the school system, so we will be away from the hoopla, etc. for most of the time and then jump right into the swing of things come the weekend. My friend Terry, a therapist in the bay area suggests we look at our experience on the "strip" as an anthropological research study in human behavior…..watching people has always been of interest to me.
We will be leaving LV on Monday the 27th and then heading south…..probably cross at El Paso and take the route thru Chihuahua….or go to San Antonio and visit Tim and the kids and cross at Laredo…plans are etched in butter as Keith likes to say.
This is a big trip for us, but one we are up for….our bags are packed and we're ready to go….we've said our goodbyes, hugged all the kids and prayed for lots of snow to fall in Colorado as soon as we are safely out of range.
Not sure if our computer is still working down in San Miguel, but we will always be able to check the web site or our emails if you want to get in touch…..we'll be back in March for my next appt. and for Keith's birthday….sometime around the 20th so for all of you that we're leaving behind, you'll be in our thoughts and we'll see you in the spring….and for all of you we've not seen for a year, you're in our thoughts and we will definitely be seeing you real soon!
Besos and Abrazos,
Angie and Keith
Tuesday, December 31, 2002 at 05:24 PM (CST)
Riddle: What's the same on both ends with nothing in the middle and won't ever appear again? 2002….you knew that didn't you. Since this is the last day of 2002, I reflect on the year and think…what a long strange trip it's been.
I was at my cancer treatment center yesterday getting my zometa infusion (a drug that promotes bone growth), when I overheard the lady in the recliner next to mine say to the nurse who was starting her chemo: "I have been a vegan for 20 years, eaten only organic foods, grown much of it myself, never smoked, exercised regularly, how did this happen to me?
I couldn't help but think: it just happens…we have no control over what happens to us or our family. Living a healthy lifestyle doesn't guarantee anything but the satisfaction of living a healthy lifestyle. Perhaps, because of it, one endures the treatment and recovers much faster.
I remember how devastated we were when we first heard of our grandson Brian's diagnosis of leukemia in 1997 when he was 4 months old. We were overcome with sadness. How could this happen to a baby? Somehow we thought our family would always be spared a serious illness. Then I got my diagnosis of myeloma in 2001 and immediately thought of Brian. If he could survive two transplants to beat his leukemia, I would be inspired to do the same. It seems almost everyone I meet has someone in their family with cancer….it happens to so many people. We deal with it and in so many instances, we survive grow strong and get on with our lives…there are so many survivor stories, we should rejoice.
Hence, the awareness of our inability to control our destinies, the need to be grateful for what we have and as the Dahli Lama says: "Our main goal is to be happy"
So here's wishing you all a very HAPPY NEW YEAR, a very HEALTHY NEW YEAR and if its not too much to ask, a very PEACEFUL NEW YEAR !!!
Love,
Angie and Keith
Tuesday, November 19, 2002 at 07:35 PM (CST)
Hello Everybody!
Good News! Just received the final test results from my transplant coordinator at UNMC and I can say I’m living in a cancer free zone!!!!!!! It was such wonderful confirmation of what I’ve been feeling for the last few months. I just KNEW the autologous stem cell transplant would be my best chance at getting rid of the myeloma and the program at the Lied Transplant Center has such a good reputation for success. Even with that confident attitude, the mind seems to have a dark corner where doubt lurks. Meg said the labs were normal, the MRI showed marked improvement in the hip and pelvic bones…the myeloma lesions were gone and the fracture lines had disappeared. The bone marrow aspiration showed no signs of myeloma. Isn’t it amazing?
Dr Tarantolo was still a little concerned about the peripheral neuropathy and wants me to see a Neurologist….which I will do soon. Otherwise, he doesn’t need to see me for a year! I said fabulous and he said he wouldn’t take that personally. Further instructions for the next nine months: take low dose steroids, continue Zometa infusions for bone building, no jogging and wear sunscreen. No problem!
Thanks to Niki and Jeff for looking after us while we were there…. Having not been exposed to elementary school children since transplant, it only took us 3 days to come down with a bug (mostly GI) going around the house and the neighborhood….unpleasant for a few days and a real test to our immunes systems….by the weekend, we were ready for putt-putt golf with the boys.
Now we will look forward to spending the holidays here in Colorado with family and prepare for a return to San Miguel around the first of the year. The worst is over and life begins anew….not sure I need a web site anymore as it is offered for cancer patients and it appears I don’t qualify, but I will keep it up and running until I figure how to print the journal entries and the guest book. I will cherish every message left on the website. Those notes sustained us thru the worst of times. It provided us with such a sense of closeness to all of you.
Gotta run…..time to pop the cork on some bubbly to celebrate with David and De!
. Mucho Amor from the Greeklady and her best friend….A n’ K
Our email is aksutton.1@netzero.net so keep in touch. Once we are in Mexico we will let you all know how to reach us via cyberspace
Friday, November 01, 2002 at 11:52 AM (CST)
Dear friends and family,
I guess at times like this, no news is good news. We, like others, have been glued to our set. So much going on, politically as well as socially. We had just finished reading a good book called “Bel Canto”….a fictionalized version of the hostage takeover of the Japanese embassy in Lima, Peru, during a concert by a famous soprano…..it paralleled the situation at the Moscow theater so much it was eerie. Terrorism is becoming a daily part of our lives, as well as negative political ads.
Which brings me to note that our medical problems almost take a back seat to everything else that is happening in our world. For instance, I have been hearing from High School friends with updates on fellow students and realize that so many of us are faced with life and death scenarios and somehow fighting for recovery. We're a tough bunch!
We are reduced to minor complaints and are very grateful for that. Hardly worth mentioning, but I will anyway. I am plagued with a lingering peripheral neuritis on my left side…apparently a result from the heavy-duty chemo….hopefully it will dissipate as time goes by. It hasn’t yet affected my ability to stay active. I am very grateful for the medications that are available to resolve these problems.
On the up side: My hair is growing back!!!!! After 6 months of no bad hair days, I look forward to having something on my head other than my wool cap….we had been enjoying fabulous sunny weather with many trees still retaining their leaves and now we have 6 inches of snow and shivering temps. Keith just came in from shoveling snow! He hadn’t done that for many moons. So typical of Colorado, the sun is poking its head out as I write this…..David is keeping us entertained in the evenings with his wonderful collection of DVD’s….nothing like curling up after dinner with a good movie.
We are still planning on leaving for Omaha and the medical center on the 10th or 11th of November (depending of the weather) for that all important 3 month checkup. I work very hard to think positively of the results. I must believe I have beaten this cancer!
To all of you who are still checking into our updates…..thanks for thinking of us and keep those cards and letters coming……stay warm…..ciao….A n’ K
Tuesday, October 15, 2002 at 04:30 PM (CDT)
Dear Dear Friends,
We confess to delaying an update, primarily because we feel that we are in a lull with not much happening. Then, we took another look at our lives and changed our minds. Considering what is going on in our world, good news from the “fierce invalids” might be refreshing.
We are into week three of our “get back in shape after 15 month of illness” and so far so good. We each have our own workout….Keith has grandson Spence as his personal trainer and I am doing my old routine of swimming, walking and yoga. So far no repercussions from all this physical activity Ojala!
I got my passport catheter removed from my arm after living with it for 6 months…a relief to have it out. Any lab work in the future will be the old fashioned way…thru the vein. It also represents the end of chemo.
Speaking of the future, we have an appointment at the UNMC transplant center for the 3 month work-up on the 13th of November, so we will head for Omaha and Niki’s around the 10th. It will be “closure” on the transplant in our minds….we just know I’ll ace the tests and be given some time without medical concerns. Six to 10 years would be nice…..
Maybe time to think about San Miguel???? Always an option…..
Musn’t complain tho about our beautiful Colorado weather….sunny warm days continue….outdoor flower beds still blooming and leaves still on the trees, some turning a vibrant yellow. We are fortunate our apartment faces South so we always get solar heat during the day…this is important for us “Mexicans” as 5 or 6 sunless dreary days would send us packing.
We had a great outing on Sunday. Went to Denver to wish Gale and Warren bienviaje…they leave for San Miguel on the 25th….to do some serious house hunting for a bigger place since they will be full time San Miguelenses. They had just seen “Frieda:” at the Denver Film Festival and said it was a fantastic film..it will be a few weeks before it comes to the Fort.
David and De are still as wonderful as ever and make our life here so much more pleasant….the cats continue to help us not miss “our dog Spot” quite so much and we know she is living the good life at Rancho Jauguar with all her friends. Thanks Bob and Jenny for looking after all of us.
All for now….with much love
A n’ K
Sunday, September 29, 2002 at 05:55 PM (CDT)
Dear Dear Amigos,
Just want to check in and give you all a little update. It is nice to feel well enough to want to get back to the computer….been a long time. I admit that it took a cup of REAL coffee to get me started….whatever works.
To describe my condition at the moment, first of all, I am completly pain free! I would like to quote someone else from my transplant book in the chapter on Life After Transplant: “You know, it really didn’t hit me until after I got home and had time to think about what I had been through. For some strange reason, it was harder for me to cope after the transplant than when I was in the middle of it.” So true! At the moment, I am adjusting to the fatigue that seems ever present throughout the day, but as every tells me this is to be expected after an organ transplant and to be patient….never one of my strong suits. Have you ever wondered why they call sick people patients?
Good news on Keith…he aced his treadmill stress test and Dr. G has given him a thumbs up “no restrictions” on activities…which means he can get back to some fitness activities and recondition his bod. After being chief caregiver and personal physician for this greeklady for the last year it might be a nice change to be exhausted from lifting weights, cycling and rowing instead of all that other stuff.
I, too, have been given permission to start back on a moderate reconditioning program…mostly swimming and treadmill, so these fierce invalids can get their healthy lives back. Can’t tell you how many times we have told ourselves how fortunate we were to make the decision 17 years ago to start our Mexican adventure when we were young and healthy….what stories we could tell and oh those fabulous margaritas!
We have to return to Omaha in November for a final workup post transplant and then we might start thinking of heading South. To be honest with you, we think about heading South quite frequently. Everyone needs a dream. More realistically it will be January-February. We will especially look forward to spending time with Niki, Jeff. Eric and Brian under healthier circumstances. Niki had her hands full looking after the both of us! We weren’t exactly the fun couple.
For the time being, we are enjoying a lovely Colorado fall and busy enjoying our family, working on our casa, with David and De doing most of the work, although Keith has been doing a lot of electrical work, what else? We are making preparations for a big celebration here at the house for our grandson, David Keith III and his fiancé Kelly’s engagement party. We love those happy occasions!
We will always be grateful for all the calls, cards and emails during this entire process….couldn’t have done it without you all.
Ciao and mucho smoochos (as our friend Judith likes to say)
A n’ K
Monday, September 16, 2002 at 11:47 AM (CDT)
Greetings to all! We're back in Colorado. Another step in the right direction. The trip home was OK but Angie continues to have nausea and occasional vomiting. Needed some fluids IV over the weekend as an outpatient. Seems better today. She is to see DR. Madgyesy next week. Til then is on meds for nausea. A retrospective view of the last two monthe would be that the treatment went better than anyone could expect. The complicatons, however, tho are common, just not plesant. There is no doubt that the spirit of good wishes from everyone is an essential part of getting through the difficult time. We thank Niki for her managing the web site for us, Niki and Jeff for their support during the period of outpatint care. We miss the grandkids but are grateful to be home. A&K
Wednesday, September 11, 2002 at 07:05 PM (CDT)
**NOTE: NEW EMAIL ADDRESS BELOW!! **
Hi all,
Just another quick note......Tues, Sept 10th, Mom and Dad pulled out of our driveway and headed back HOME!! They got the dismissal from treatment here on Monday that they were hoping for and wasted no time getting out of here!! They are supposed to come back for follow up in December, but until then, they can resume care with their docs in Colorado.
They made the drive in two days, to make it easier and less stressful, so they should have made it home today. I'm waiting to hear, but assume no news is good news and they are just getting unpacked and settled in. I know they appreciated everything they had here, but I'm sure they are happy to be back in their own space and their own routines.
When I saw mom last, yesterday, she was doing ok, but still having some trouble off and on with nausea and vomiting. I know it will take time til she is back on track, but all in all, she has done so well. I don't think we could ask for much more.
I will leave the next update in their hands now that they are home, and perhaps they can collect their thoughts and give you a better report from their own perspective.
Thanks again, as always, for all your good wishes.
Take care,
Niki
Sunday, September 08, 2002 at 04:04 PM (CDT)
Well, a quick update.......Mom has been home from the hospital for a week now. The first couple of days she was feeling pretty good and getting around, but had a small setback with nausea, vomiting and diarrhea which required her to go back to the treatment center and get some fluids........this of course came after she had her central line removed, so they had to start an IV on her to get the fluids in her. When she saw the doc last, she thought it would he would be releasing her to go home to Colorado, but he just couldn't do it with her feeling so poorly. She will try again tomorrow (Mon), but at this point, I kinda doubt they are going home yet. I know they are both anxious to get home........they will probably be more comfortable there; not that they aren't comfortable here, but, it's different being in your own space, not to mention at their house, they don't have stairs like here. It just would be nice for her to be feeling a little better to make the drive easier.
I think Mom is very frustrated with how she is feeling right now......I think her expectations were that after the transplant and after she left the hospital, she would be "all better"......but she's not. It's hard for her to accept the fact that it's just going to take time.
So, that's about it for now. Considering all of the things that could be going wrong, she has still done very well. This is just a time of recovery......slow going, but going. Dad is doing well......he's the best at taking care of all of Moms needs. I think he is grateful for the U.S. Open right now.....it has gotten him through all the days while mom has been resting! (my hope is with Andre!)
They both appreciate all of your words of support and the "grow cells grow" chant. They are growing, so it worked! Now we just need the effects of the chemo to end so she can begin to feel better. This can take time. She doesn't have the energy to write back right now, but she will when she is up and around more and feeling better.
Take care.
Niki
Sunday, September 01, 2002 at 11:51 AM (CDT)
Well, yesterday was a false alarm on the homecoming because of the fever she had on Friday, but today it is official.......she is coming home!! I am on my way down there to help them pack and move, but I just wanted to get the word out that she is getting out today.
One of us will update more when we can.
Hooray!! This is a big step.....I hope all the steps from here on out are all forward!
Happy Holiday!
Niki
Friday, August 30, 2002 at 09:04 PM (CDT)
Good evening everyone,
I hope I'm not jinxing anything by reporting this, but, the news today was that Mom is probably getting "kicked out" of the cooperative care center at the Lied Transplant Center tomorrow.......her white count today jumped up to 7000.......she did spike a temp again of 102, but they said they expect that with a white count jumping that high......they don't seem worried, but they will get another blood count in the morning and have the doc see her and then if all is well, they will be back at our house tomorrow.........
Keep your fingers crossed,
Niki
Thursday, August 29, 2002 at 12:42 PM (CDT)
Well, well, well........
can we have a drum roll please??...........
The white count went from .8 yesterday to 1.9 today!!!!!
Hooray!!! Our little "grow cells grow" mantra is working!!
The last few days have been really low for her....for them both, actually. The pain in Moms mouth and throat have made it impossible to eat, drink.....the medications to help make her feel better have actually had her pretty out of it......probably better to be resting/sleeping through all of this part anyway, but it sure leaves things quiet and lonely for the partner who is taking care of you! I think my visits and phone calls have made a difference to Dad.....yesterday he got out for a bit for lunch and to check email.....not much, but enough to get a little refreshed. I had planned another trip today to get him out today, but I ended up sick this morning....so, it'll have to wait til I feel better or til I know that I am not contagious with something.
Anyway, today is Day +8 and things really are looking good. Mom got platelets again yesterday and her count today is 139 (from 19, before), so those cells are doing their thing to keep her platelets from dropping again. She actually feels better today and was getting nourishment on her own. So, I hope this is the beginning of things looking up and the ending of the nasty side effects of the chemo. She has lost some of her hair, but it will grow again.
I'll update again when I have more news. I'm grateful that we have our first positive signs of a healthy new life for my Mom. I hope that all continues to go well and that there aren't any major setbacks, however, I am always prepared for that possibility. Let's just hope we don't have to deal with those possibilities.
Cautiously optimistic,
Niki
Tuesday, August 27, 2002 at 06:12 AM (CDT)
HAPPY ANNIVERSARY MOM AND DAD!!!
I can never remember how many years it has been, is it 34 this year? or 35? Well, regardless, you've made it through this far and now you have your first really tough test together. I know this isn't what you had in mind for celebrating, but you couldn't get much closer, that's for sure!!
Now, for an update for everyone else. Things are changing more every day for Mom. She is at day + 6 and the chemo she had is really hitting her digestive system hard now. I will say that fortunately, her heart, lungs, kidneys and liver are all in great shape.....this is important. But her digestive tract has her feeling not so good. She has mouth sores that make it difficult/near impossible to eat or drink anything....they go down the back of the throat, into the esophogus and into the stomach lining, etc. This causes pain and discomfort. She is also nauseated, has been vomiting and having diarrhea.....I hate to say it, but as nasty as this all sounds, it is normal and expected for the treatment she has received. She received her first platelet transfusion on Sat, and needed another one yesterday, along with fluids, potassium and antibiotics. It was a long clinic day yesterday and the day ended with her spiking a temp so they have to run blood cultures to rule out infection.....she's on a ton of antibiotics already to cover most bugs, but you have to check and see what kind of infection it might be in case it needs to be covered by a different drug. She has no white cells at all to fight off infection right now, so she is at the mercy of drugs to help fight them for her. The sooner her white count comes back, the better she will start feeling......her mouth sores, diarrhea, nausea, etc. will begin to fade as the counts come back and her risk of infection will be less when she has white cells to fight for her. They say it could be anywhere around day + 8-10......only a couple of days away, but they are long, long days when you are dealing with everything she is right now. Just keep chanting, "GROW CELLS GROW!!"
I know this is probably more info than mom would want to put on here herself, but I think it's important to let you all know exactly what she is going through.....I know she would probably glaze over it a little more and make it sound nice and tidy and positive so as not to worry everyone and I know she doesn't want people feeling sorry for her, but I have tried to tell her that the truth does not do that......it only brings more support and love and good thoughts and prayers. This is a difficult time right now.....the worst so far, and hopefully it won't get any worse than this, but that too is possible......every little thing that goes wrong right now could be the start of something worse, but the team here is always right on top of it all and working hard to counter act whatever they can.....it's a constant juggling act.....first treating symptoms with drugs, then treating the side effects of the drugs, and on and on......but they are good at it. Looking back when it's over, it always seems like it's not as bad as it does when you are in the midst of it.
Anyway, I am rambling now. Jeff, Eric, Brian and I went down to visit mom and dad on Saturday for Brians 6th birthday. We took ice cream cake from DQ and Brian opened his gift from Papo and Nana....a Zaboomafoo video!! He loved it and had to watch it right away! We kept the visit short, but I think it was a nice diversion for mom and dad from the routines they have gotten into. Of course, this was before mom started feeling as bad as she does now. I took photos and should have them downloaded to the yahoo photo page today, as well as a few on the photo page here, so be sure to check them out.
I'll update again in a day or two unless there is more to report sooner. Thanks for all your thoughts and prayers. They are probably less likely to get to the computer right now, but I will print off your messages and bring them to them so they can still be in touch.
Niki
Friday, August 23, 2002 at 02:42 PM (CDT)
Mini update:
Transplant day Mom was pretty much in and out of consciousness due to the heavy sedation. She slept most of the day. After returning to her room, Dad kept a close eye on her and monitored her vitals.....her blood pressure dropped out in the late evening and after evaluation by the nurse on call, they felt more fluids were needed. She got those til midnight and then did well throughout the night. Yesterday, Thurs., she got some more fluids in the morning and started the growth factor shots again, to help the cells grow and engraft faster. Her red blood count was down to 8, so they scheduled her for a blood transfusion for today. She will spend the better part of the day getting that transfusion and then should be done for the day. At this moment, I don't know about the other counts, but Dad said she had a pretty good night last night and all seems to be going well. I saw her yesterday and she was up and around and looking good......it was hard to believe she was the same person who was so knocked out the day before! What a trooper!! Dad looks good.....better than when they first arrived in town, and seems to be doing ok. He takes this caregiver role pretty seriously and I think he now realizes more than ever the importance of a nurses role in medicine (vs. his prior role as a physician). He is in charge of dispensing all of her meds, keeping records of all her ins and outs (everything that goes in, and everything that goes out!), doing her vital signs 4x a day, and now she will be getting IV antibiotics twice a day, so he will be responsible for hooking up and running at least one of those doses. He is also the all around general "gopher".....getting meals from the cafe, getting ice, doing laundry! Can't say he is bored right now! There is little time for much more than treatments in the cancer center, meals, meds and rest, but they have managed to get some movies from the resource center to watch, games to play, and some exercise in the work out room. They also have a great view to the incredible lightening/thunderstorms we have had the past 4-5 nights. Last night was a bit scary with tornado warnings where we are (fortunately not where the hospital is!).
Anyway, at this point, everything is just one day at a time and I will update as often as possible. They get down to the resource center to check email from time to time, so you can still leave messages whenever you want.
Til next time,
Niki
If you haven't been to the website in awhile, you can catch up on previous journal entries by scrolling down below to "read journal" or "history".
Wednesday, August 21, 2002 at 08:41 AM (CDT)
DAY 0........TRANSPLANT DAY!!!
August 21st, 2002 will be known from this day forward as Moms "re-birthday"......the day she begins a new life, with new cells, WITHOUT myeloma!!
I am not sure the exact time, but I am guessing around 11am, central time, she will be given the "bag of life" (or three bags in her case).....I will be there to document it on film, to share with you later. It's a big day!! Can't believe I'm going through this again!!! It worked for Brian, hopefully it will work for Mom too!
Keep your fingers crossed, light a candle, say a prayer, or whatever you like.....I'll update later after I get home.
Niki
************************************
At 10:47a.m. central time, the first of three bags of stem cells began their trek into Moms veins. At 11:45 a.m. the last bag.....the last drop, finished. She had been premedicated heavily, so she drifted in and out of consciousness while I was there. She was doing fine, but will probably spend the rest of the day sleeping and resting.
So, now we wait. Wait for the potential side effects from the chemo she has had over the past 5-6 days, and wait for the cells to do their thing and engraft. The white cell count coming back will be the first good sign that everything is working. Today, it was about .9, and it should continue to drop down to 0 and stay there for a little while before it comes back up. Her red blood cells and platelets are still holding, but those will drop down more too and she will need to have them replaced. This is all normal, and just a matter of time as to when. So, that's it for now. Let's start the drum roll now to get those little cells marching into place and doing their thing!! GO, CELLS, GO!!
I'll try to update tomorrow, or the next day as to how she is doing once the sedation wears off. Dad is hanging in there and doing a great job as her caregiver. Everything so far has just been a warm up.....the next few weeks may be a real work out for them, but I know they are up to it and they will do fine.
Send your "happy re-birthday" notes along.....I know they will both be happy to read them when they can.
Niki
*********************************
Fri. Aug 23 mini update:
Transplant day Mom was pretty much in and out of consciousness due to the heavy sedation. She slept most of the day. After returning to her room, Dad kept close eye on her and monitored her vitals.....her blood pressure dropped out in the late evening that day and after evaluation by the nurse on call, they felt more fluids were needed. She got those til midnight and then did well throughout the night. Yesterday, Thurs., she got some more fluids in the morning and started the growth factor shots again, to help the cells grow and engraft faster. Her red blood count was down to 8, so they scheduled her for a blood transfusion for today. She will spend the better part of the day getting that transfusion and then should be done for the day. At this moment, I don't know about the other counts, but Dad said she had a pretty good night last night and all seems to be going well. I saw her yesterday and she was up and around and looking good......it was hard to believe she was the same person who was so knocked out the day before! What a trooper!! Dad looks good.....better than when they first arrived in town, and seems to be doing ok. He takes this caregiver role pretty seriously and I think he now realizes more than ever the importance of a nurses role in medicine (vs. his prior role as a physician). He is in charge of dispensing all of her meds, keeping records of all her ins and outs (everything that goes in, and everything that goes out!), doing her vital signs 4x a day, and now she will be getting IV antibiotics twice a day, so he will be responsible for hooking up and running at least one of those doses. He is also the all around general "gopher".....getting meals from the cafe, getting ice, doing laundry! Can't say he is bored right now! There is little time for much more than treatments in the cancer center, meals, meds and rest, but they have managed to get some movies from the resource center to watch, games to play, and some exercise in the work out room. They also have a great view to the incredible lightening/thunderstorms we have had the past 4-5 nights. Last night was a bit scary with tornado warnings where we are (fortunately not where the hospital is!).
Anyway, at this point, everything is just one day at a time and I will update as often as possible. They get down to the resource center to check email from time to time, so you can still leave messages whenever you want.
Til next time,
Niki
Wednesday, August 14, 2002 at 11:19 AM (CDT)
Well.......it has begun!! Around 9am this morning, Mom began the harvest. I just checked in with Dad at 11:30 and all is well and she's doing fine. Other than being a little cold, she has no complaints. They think they will be done in about an hour and a half. She will get another growth factor shot and then they will head back here to our house. They are hoping for a one day only collection of cells, but we will find out whether that is the case or not. If it's not, she will go again tomorrow morning to collect some more cells. Keep your fingers crossed for the easier route!!
That's it for now. I just wanted to update you all with the latest. I can't believe how well this has all gone for her....I hope it continues to be the same throughout the whole process, but the real test may come after the high dose chemo begins......will update more as I know it.
Take care,
Niki
******SEE BELOW FOR NOTE FROM MOM******
Well, We're home from the clinic and here's the latest: The harvest this morning went so well that they collected 7 times the stem cells they needed for the transplant! We are so grateful!
We move into the Transplant Center tomorrow and will be inpatients for at least 3 weeks. They start me on chemo tomorrow for 6 days and will do the transplant of my stem cells on Wednesday the 21st. Hooray!!
Niki will give you the address and telephone number of the transplant center as soon as we get settled. They have an 800 number for those of you stateside.
All for now, We're exhausted, but relieved...Love you all
A n' K
*******PHONE NUMBERS POSTED BELOW*****
TOLL FREE IN U.S.-888-805-1115 (RM 4721)
OR 402-559-5599 (RM 4721)
OR DIRECT- 402-559-3421
Monday, August 05, 2002 at 12:28 PM (CDT)
Hello Everyone....I just downed 9 steroids so I think I have the energy to check in with the latest info on the greeklady before she heads off to the med center for another shot and whatever else they can think of to do to me.
Since my last entry, I had my catheter surgically installed....we refer to her as cather-in...must keep her clean and aseptic so she can be there to do her job, which is primarily receiving and returning (primarily blood) bodily fluids and medications/poisens! That went ok..I was sore for a a few days and am having a little trouble with these two catheters hanging off my neck. Then the next day they put "Cather-in" to use by starting my first chemo called cytoxan. They gave me a lot of fluid with that, saline water so I was retaining fluids to an uncomfortable state, but that is dissapating today.
Yesteday we started the growth factor shot which is supposed to fertilize the white blood cell production so they will be ready for the harvest next Monday or Tuesday. Its too bad that they have to administer it thru a process of three shot at the same time in three different places on a daily basis for the next week. I threw that information in for all you squeemish ones out there. I am beginning to feel like a voodoo doll.
Before I forget, I wanted to share with you the gift of a wonderful bracelet that Niki made for me that has all sorts of healing powers. It is based on the legend of St. Peregrine, an Italian Priest who was designated the patron saint of cancer. It is absolutely gorgeous filled with beautiful gemstones all attributed to specific powers. I have been wearing it constantly since she gave it to me, it is so lovely and thoughtful of her to make this for me. I am surprised how many of my caregivers have heard of him.
So I am covered in that department, along with good thoughts,flowers, prayers, and lots of candle lighting.
Keith is out cooling off the car...does that give you a hint of Omaha weather. We actully wear long sleeves to stay warm inside as it is refrig temp and outside is livable only between 6 and 8am. Oh well, this shall pass too.
Love you guys.....Keith is by biggest healing gem and he sends his love to you all.
A n' K
Wednesday, July 31, 2002 at 10:55 AM (CDT)
Dear Greeklady Fans,
I would like to begin this by sharing yesterdays dinosaur lesson, taught primarily by Brian with some help from big brother Eric. We were asked to name our favorites after learing all about the favorites of the Daubach family.
Well, after much reading I came up with my favorite which is a pachycephalosaurus..a 15 foot plant eater with a skull that is 10 inches thick....I must have related to that in some way. Brian of course, filled in all the details that I missed. Keith choose Quetzalcoatlus, which we were told is the largest flying amimal with a 40 foot wing span and weighed only 110 pounds. Eric prefers the mean and nasty deinonychus...a meat eater with serious claws. Sweet Niki has a soft spot for the Diplodocus or Apatosaurus, formally known as the Brontasaurus...the gentle side of the species...Brian told us his Daddy likes the ankylsaurus which he describes as a 35 foot armadillo with a giant club tail. That leaves us with Brian's favorite which changes from day to day, but yesterday he was leaning towards the triceratops, a 30 foot 3 horned plant eater. Today he told me the stegasaurus was his favorite.
Now the reason all this seems so significant to me is that this is the little guy who survived two transplants and all the horrible stuff that they involve and 3 years later has become a very impressive expert on dinosaurs that we never knew existed. Now this goes along with his expertise in many other fields which are keeping us on our toes so he won't think his grandparents are retarded instead of retired. So I am encouraged at the wonderous capabilities of the human body to endure.
So here is what we know so far. Colorado Blue Cross Blue Shield has approved the transplant so off we go. Today I attend a catheter class to learn how to take care of the chemo delivery system....it will be surgically installed on Friday and be the main line for drawing blood and giving drugs.
They want another look at the pelvic/hip region so I'm due for an MRI today at 5 as well. Tomorrow I see the doctor...not the famous Dr. Tarantolo, but his partner Dr. Hauky...pronounced Hokey? Isn't this fun? Then catheter surgery on Friday and Saturday they give me something nasty
called cytoxan...it takes 8 hours so I just go in as an out patient. I guess I get Sunday off to enjoy the NY times and hope the drugs from Saturday don't throw me off too much.
All next week I get injections, Keith can give them to me here at home so I don't have to go to the hospital. These are a growth factor that stimulates the production of stem cells that they need for the harvest. Looks like we won't have to check into the transplant apartments until the 12th or 13th of august....I assume all the serious stuff starts then.
I really don't want to get ahead of myself here...for the first time in my life, my curiousity gene has receeded to the back of the brain and doesn't want to know any more than it can use in the next 48 to 72 hours, so you just have to be understanding on the gaps and pauses.
Keith continues to be my constant companion thru this entire drama and Niki is making us marvelous, healthy meals.....what else could we ask for.
Thanks for all the notes and good wishes you all have sent....but be careful with all that candle lighting....we don't want to be starting any fires.....
Ciao for now.....A n' K
Saturday, July 27, 2002 at 06:57 PM (CDT)
Greetings from Omaha! It's hard to believe we are here and beginning the next phase to rid myself of this disgusting disease.
Our trip to Omaha was uneventful...we threw our stuff in the car and headed east. During the drive, it occured to us that it was a year to the day that I got sick in San Miguel with that devastating infection. Time takes on new meaning when you're dealing with a chronic illness.
We arrived at Niki's Tuesday night and checked in early Wednesday at the University Medical center for a series of tests required by Blue Cross Blue Shield to see if I am healthy enough to withstand the transplant. It was a grueling day....one test following another....brutal describes it well. I finished with a MRI in which they strapped me in....apparently they didn't trust me to hold still for an hour....hence the straps....thanks to Vitamin V, I made it thru that ordeal.
Meg, my transplant coordinator called last night to say the test results were back, my labs were good and I have the heart and lungs of a teenager! I'm hoping that's good. All I've done since I got here is sleep and rest. The stairs seem to be a bit of a problem since there is a reccurance of pain (fairly minor) after being pain free for at least 3 weeks. I attribute it to the stairs since I haven't had to negotiate stairs for months now....oh well, it's only for a a few more weeks...I won't be admitted to the hospital until the 11th...if all goes according to plan.
Bob and Jenny's visit to Fort Collins was so much fun, it was like having a big party before phase 2. Good food, good wine, scrabble, cribbage, movies....just like our life in San Miguel. Jenny and I were surprised that we played some fairly respectable scrabble considering it had been 6 months....
The Daubachs have made all sorts of preparations to make our stay here comfortable. They also have provided us with two young boys to keep us amused and entertained. What a kick to be around Eric and Brian....they have become our gofers as well. We're so lucky!
We're basically free for the next week....we meet with Dr. Tarantolo next wednesday and then it begins....of course, I or Niki will keep you posted with all the gory details....just joking of course, I refuse to participate in gore....
All our love to all our family and friends...Especially to David and De who are most likely lost without our constant presence....
Happy first birthday Madeline!
A n' K
P.S. Once again, you can still reach us through the hotmail account (listed here on the webpage) or through Nikis email, (listed on the previous journal.....just click on the "history" button at either the top or bottom of this page to see past journals).
Tuesday, July 23, 2002 at 06:36 AM (CDT)
Good morning all,
Just a short note to let you all know that the next stage of treatment is set to begin......as I write this, Mom and Dad will soon be on their way to Omaha in their new (1993?) little car to begin the next phase of this adventure :) !
They should be arriving later this afternoon or early this evening, and then Mom has a pretty full day of testing at the Med Center tomorrow (24th). After that, they are free to hang out, play, take it easy or roam where ever they like until approximately the 31st of July when preliminary treatment begins before the transplant. Dates are not set in stone yet, but we will keep you informed of what happens when, as we know it for sure.
Of course, you can still contact Mom and Dad at their hotmail account, but if you need another way of getting a message to them, feel free to do it through me at: ndaubach@cox.net . I know that as she feels up to it, or has access to the computer, she will continue to write her journals, but when it doesn't work out, I will keep you updated.
Thanks to you all for your love and support of my parents. It feels so good to know they are surrounded by such great friends/family. I know they appreciate it so much.
Take care.
Niki
Saturday, July 13, 2002 at 09:55 AM (CDT)
Dear Beautiful People........
I'm home and happy to be here! They let me out yesterday morning....and I have been feeling great since I got in the door. This last round was so easy.....no complaints, except for the fact that I couldn't leave the hospital until the last drop. Had lots of visitors, Kellee and Erika were cooking for me....she made her special cajun red beans and rice.....Lars did cookies and Starbucks caramel frappacinos...Lonnie Sue brought chocolate, Betty sent a huge box of Jelly Bellys.....And the fact that my sis took me off to Boulder before I went in to see that crazy movie(My Big Fat Greek Wedding) about an hilarious Greek family helped immensely....I found myself laughting all week. I just know that whatever myeloma cells were left got zapped.
Keith set up our own little computer corner while I was gone so it's great to come home to our very own system....no excuses about having to use Davids PC. I'm still in awe that I can type away and surf as long as I want without watching the clock....
As to the next move on my road to recovery, I will probably go to Omaha for a few days of testing around the 25th in preparation for the stem cell transplant. We'll return to Colorado and await for the next step, which will be the harvest of my own bone marrow. I'll know more later and promise to keep you updated. There is so much else going on in my life, I just can't get too far ahead of myself. Bottom line would be to be on the mend and done with all this by the end of September with a prediction of a twenty year remission....hows that sound for high hopes?
I will get back to my physical therapy Monday, rebuilding this old body back to some semblence of shape....my trainer said my strength has improved amazingly....and David has set up a small gym for all of us to do our routines....I work out at the pool three times a week and lift weights on alternate daysl....that all followed by theraputic massage should get me ready for what lays ahead.
Best news at the moment is a visit from Miss Jenny and Mr. Bob. We are sooooo excited about this.....!!!!! They arrive Wednesday the 17th and will stay until the 22nd. Time to get the scrabble board dusted and start studying those three letter words. Of course, I will use every rationality I can think of to make up for my losses...who knows, maybe these chemicals have scrambled my brain cells enough to come up with some very clever bogus words. Bob and Keith will of course go at each other with dominos and cribbabe....such fun.....!
A sincere thanks to all of you who have been getting me through some of the tougher times....dearest Niki for keepiing everyone informed when I just couldn't bring myself to write anything...I feel your presence in all that I do....its amazing how "good thoughts" just travel through the airwaves...your transmitters are loud and clear and my receiver is on wide open!
Keith and I are so glad you're all out there for us.......mucho amor to you all......
A n' K
Thursday, July 04, 2002 at 01:38 PM (CDT)
HAPPY 4TH EVERYONE!!
I hope this finds you all enjoying your holiday. I am writing for my mom again, as she doesn't feel up to doing it this time. I changed the look of the page just for the holiday today.
This will just be a brief update on the results from Tuesdays visit with her doc.
Actually, the good news is that all of moms labs and test results were really quite good. Her MRI was unchanged, but they still feel that it's going in the right direction.
The bad news, if you want to call it that (it's not really bad, just disappointing for mom I think) is that they have decided to do another round of chemo (starts on Mon July 8th) before going to Omaha for harvest/transplant. Part of the reason for this is that they feel she keeps getting better and better with each round. The other reason for this decision, is that the specialist in Omaha is out of town for two weeks and they don't want to let her go WITHOUT treatment for that long before transplant. Dates are not set yet, but it looks like perhaps she will come to town (Omaha) the last week of July or the first week of August.
Personally, I am not surprised with this decision, and actually, I fully expected that they would do at least one more round. I tried to prepare mom for this, and I think she understood that possibility, but was still really hoping to be done with this first stage of treatment and was ready to be moving onto the next phase. I totally understand and I certainly don't blame her. She said she is fine with it now and just wants to keep going.
It sounds like they were preparing for some family gatherings for the holiday and I think she is going to see "My Big Fat Greek Wedding" with her sister, Maria, this weekend before she heads back in patient again. I think it will be good for a laugh to start off this, hopefully, last round, before transplant.
Be patient with updates. It's not always easy to get motivated to get to the computer to write, but I do know they still love to hear from you all and appreciate your support and love. Keep it coming, and just know that even if they don't write back right away, they will eventually and still like to hear from you.
Happy Holidays and take care.
Niki
Sunday, June 23, 2002 at 02:27 PM (CDT)
Hola Todos!
A voice from the past finally emerges on her web site. I know its frustrating to check in for info only to find out the principal party isn't participating. This last go round was totally different than all the rest and I just wasn't ready for the change. I seemed to wimp out for about 10 days and became her royal curmudgeoness. Actually, I didn't have enough energy to be too difficult, mostly slepted and fretted over why this time wasn't as easy as the others. The why doesn't really matter, only matter is that it's past and I'm much more comfortable and my labs are looking excellent. I'm in physical therapy, feeling very little pain....even decided to cut back on my morphine as of this morning (hope that wasn't a mistake) sleeping well and will have a run of final tests these next few weeks to find out just how well the chemo worked.
I meet with Dr. Diana on the 2nd of July to put all the pieces toether and decide the our next plan of action. Ideally, stem cell transplant would be super if all is in order. I keep hearing such sucess stories I am definitely ready to jump into it and get this thing behind me! "To the moon Alice!!!!"
As to the rest of our lives....we are all doing well, settling in a little more each day and still very content with our move. We especially love hearing from you all...it is definitely what keeps one going. I especially love all those compliments on my shiny head....you know, its the perfect hair do for the summer heat and I never have a "bad hair day"!
All for now.....will let you know definitives on the sct as soon as we know more....until then.....besos y abrazos....A n' K
Saturday, June 01, 2002 at 04:06 PM (CDT)
Dearest friends....it sure has been a long time since I've had the time and energy to update you all on our progress, so this little note will have to do.
Today is mvong day, finally....the grandkids have been at it all day and we are so excited to spend our first night in the casa nueva. The minor construction took longer, of course, but turned out so well, we are content. And of course, De furnished it so nicely with treasures from her Expressions Store....at the moment, there is not a hint of Mexico in our little apartment. But of course, what would you expect? This is our Colorado home. The neighborhood has a feel of foothills, large conifer and evergreen trees, great specimans of deciduous trees....open expanses of green space, nothing fenced in so there is a reak sense of mountain meadows and the birds love it here..... There is a lovely large lake, just around the bend from our house, with walking trails around it. One day, Keith and I hope to find a little aluminium row boat to cruise around in the cool of the morning....only canoes, kayaks, sailboats allowed, nothing with motors. Rowing will be a good cardiovascular workout for both of us. Aren't we lucky to have all this come together like it did? Now our biggest concern will be how the cats, Tomas, Lily, and Katie will adjust to this traumatic change....Time will tell, but up to now, they know something is going on and don't like it.....If only we had Spot here with us....we miss her mucho, but know she is happy at Ranco Jaguar with all her buddies.
Now as to our health.....good news for Keith...Dr. G. discontinued one of his cariac drugs as he was responding so well he didn't need it any more....one less pill to take is really a big deal with us! He is going to get a orthodpedic evaluation and maybe start some physical therapy rehab as well to recondition his unused muscles. I was so excited when Dr. Diana gave me the go ahead for PT....I started pool workout last Thursday and it went very well....eight months is a long time to go without physical activity, so you can imagine how happy I am to get started. We have to go slow as my left hip still has signs of significant erosion, but we will work around that and focus on what we can. I have not needed Ram Das, my walker, since I was discharged from the hospital on the 18th, so thats a good sign.
I go in for my fourth and final round of chemo on Monday the 10th and feel quite positive this will put me very close to a remission. All my labs so far have been very close to normal and I will know more definitely after talking to my doc on Friday the 7th. Of course, increasing the morphine, has helped immensely with pain control and add the steroids to that, I almost feel normal...And when I'm feeling good, Keith is very happy. We do seem to constantly reassure each other that we will be just fine....in time, of course, in time.
Had a wonderul surprise visit from Bill and Susan on their whirlwind tour through Colorado. can't begin to tell you how wonderful to connect with our San Miguel "family' so far away from home. They brought with them thier fabulous enthusiasum and uplifted our spirits off the scale. Also gifted me with a cap that reads: Wish You Were Hair" ! Isn't that perfect? It has become a favorite. For those of you who have seen the photos that Niki posted on Yahoo, you can tell that I am not at all shy about going around bald....In fact the Cabana Spa here in town shaves my head for free whenever I need it.....must say its the easiest hair "Do" I've ever had. With summer temps rising, I will stay very cool.
Well, lots happening around here here and my directorial services are needed elsewhere, so I will stop for now....please know we are doing well and making the best of a strange situation and finding it has brought us so close together to so many of our old friends...it has to be telepathic transfer of good wishes for speedy recovery because it seems to be working. Our lives are full......ciao, A n'K.
Hugs.....A n' K
Saturday, May 18, 2002 at 06:44 AM (CDT)
Good morning everyone,
Mom is in the hospital now***, just ending her third round of chemo, and since they are without phone service at the Seaway house, they also have no internet access, so I am sending in the update this time. I'm sorry it won't have the special touch that moms does...informational only, I'm afraid. Late at that....I should have written two days ago, but time and life have kept me from it.
Ok, so the news is that she is still doing really well. The MRI results showed that the myeloma and avascular necrosis in her hips are pretty much unchanged, but they are at least "reversing".....meaning they are healing and getting better, and not getting worse. That's good news. Her risk of fracture is less, but not gone. She should still use the walker ("Ram Daas" sp?), but she can start some light cardiovascular exercise. Mom and Dad bought an exercise bike that she will use to get her going with that. Swimming is an option too.
The pain she has been having (when she is not on the steroids) is due to inflammation caused by the "bone rebuilding" going on. They have increased her morphine dose to help with the pain, and the good news with that is that she still has a ways to go before her morphine dose is too much. Her blood pressure is still high, but being controlled with meds. She should finish this round today (Sat) and go home later today, and the plan for now is to do one last round in another month. After that round, they will do a bone marrow biopsy to check the status of the disease (hopefully finding that it is gone, putting her into a temporary remission). If it is clear, then I think they prepare for transplant in Omaha.
When I talked to her last, she sounded great. She has done remarkably well throughout this treatment, and aside from one little scare earlier in the week (they thought she might have a blood clot in her arm...but it was negative!), she has had little in the way of complications.....knock wood! I hope it stays that way throughout the rest of treatment.
David and De and Dad are busy with the move and remodeling at the new house. David and De have moved to the new house, and the contractor is doing the needed work there, while Dad is staying at the old house (and that is where mom will go too when she gets out today) while they wait for the work to be done. The phone has been shut off at Seaway though, so if you need to reach them, you'll need to try the cell phone. This means that they don't have a way right now to check e-mail, so be patient if you don't hear from them right away. They will check in when they can.
They did have a nice visit this week with their good friends the Curras. I am working on adding new photos to the webpage.....this website only lets you download three photos, so I am trying to put together a collage of photos to download into the three photo slots so you can see more photos. I'm having a little trouble, so for now, I have just added one new photo of the elementary school kids, Seth and Luke, who knitted some hats for mom to wear. Check back soon to see if I've managed to get the rest of the photos downloaded. (CHECK YAHOO LINK BELOW FOR MORE PHOTOS!-THANKS BILL C.!)
Thanks to all for continuing to call and write to them. They love hearing from you and look forward to it every day. Hopefully soon, they will be able to update you again on their own.
Until then, take care.
Niki
***DISCARGED AND HOME ON 5/18/02 AND REPORTEDLY FEELING GREAT! ALSO, VIEW NEW LINK AT BOTTOM FOR MORE PHOTOS***
Thursday, May 09, 2002 at 11:48 AM (CDT)
David and De are mid-way thru their usual 10 hour day...Keith is on his appointed rounds, mostly hunting and gathering and I am home alone, thinking about lilacs. Stealing lilacs more specifically. I confess that there were quite a few famous clusters of tree size lilac bushes that I visited frequently to contribute to the healthgiving aromatherapy of our home. This was in the 70's, before aromatherapy became a buzz word for keeping fit.
I used to walk the alleys...Loveland is one of those little towns that had alleys running thru the center of the block, and most of thes alleys were lined with lilacs. My forays began soon after the kids left for school....always armed with a swiss army knife...a good garden clipper would have been better...in fact, I went so far as to look at this as pruning or dead-heading rather than liberating lilacs.
There was one very lucrative spot near the old hospital, not far from Garfield School. The lilacs were of the older variety, several light shades of lavendar, as well as the intense purple which seem to have the strongest scent. Also included in this mass was the most beautiful of white lilacs. An oxymoron, maybe, but they were defiinitly the purest white....with extremely large blooms.
Now if my timing was right, I could return to my house, via the alley carrying an enormaous bundle of at least 20 stems of absolutelly gorgeous flowers. Who was to notice? I toyed withthe idea of asking first....I tried that a few times...no one home, mostly, and other times no one cared....it was almost as if they had so many they didn't even notice them. Did I get my rationale in place? Important to do that early on you know..Maybe it wasn't stealing at all?
We lived in that old victorian house with the wrap around gingerbread porch for four years and always had large bouquets of lilacs throughout the house every spring. All grown in other peoples yards.
At the same time, I began planting our very own lilac bushes every spring. I scoured the nursuries for old varieties, rare colors, etc. We planted an entire hedge of lilacs, none of which produced a single flower during our time on 5th street........these things take time you know, but tomorrow morning, K and I are planning a garden tour...driving by all of the homes we lived in as well as all the gardens we planted....should be fun....the weather is sunny, with blooms bursting everywhere....the yellow forsythia are just finishing up their 2 week show, the red buds are smashing next to the spring green of the aspen and the crab apple are doing thier "thing" at the moment.....I can't beliece there was a time in my life when I actually made crab apple jelly....what was I thinking?
My Tuesday labs were again very normal....we are running thru a few more signifiant tests to get an evaluation by Friday when I see Dianna and we get ready for round three. Hard to believe we are half way thru.....want to believe that the chemo is doing its job when it comes to killing cancer cells....but since the bone pain remains constant....less when I take the steroids, worse when I don't.....don't know what to make of it. Friday should give us some answers. My primary question is: "Am I still vulnerable to a bone fracture. or can I become a little more active? De and I are looking fondly at treadmills.....gotta get that heart rate up somehow....K won't listen to this kind of talk just yet...he wants me to remain calm for another month.....
Calm is a natural state of being under the influence of morphine....I am calm, I am tranquil, how long can I remain like this...I need to get nasty or surly or fiesty, but how can I do that to Keith. . I think I'll ask him to start calling me "your curmudgeoness"...".yes your curmudgeoness", " no. your curmedgeoness", " right away, your curmudgeoness"
Is that even a word? Doesn't matter.....I kinda like it....
The house move continues to flow along....Closing is Friday and move is next weekl Can you believe the lady that sold the seaway house to D and D is buying it back? We haven't had to deal with a realtor at all. K and I need to get our stuff together....don't have that much, but nevertheless we want all in order before I check back into Poudre Valley Hospital on Monday. Its probably a good idea to have us out of the way during the actual move.
Talked to Bob and Jenny a couple days ago and they were in the mountains of SC soon to be at the beach on Edisto Island.....wish I was there....one of the most special places....dduring my chemo, .I will visualize the ocean, the birds, the fossils, the shrimp, the crab cakes, the okra, the boiled peanuts, the corn, and mostly scoring 400 points against MJ in a perfect game of scrabble....with at least 4 bingos!!!!
btw, mission accomplished....David and Keith got to SA, picked up the car and returned home in a flash....they are still talking about how much fun it was to get bumped up to first class from Denver to Houston. We are happy to have our own car and mil gracias to Tim for getting it from SMA to Texas and to all our good buddies who provided us with trans. these last 3 months.
Niki....please see what you can do with the new photos.....make sure you include Seth and Luke, my personal knittters as well as the other good kids and teachers at Centenniel.
Plan to see a movie before my next "go-round".....called "My Big Fat Greek Wedding" Hope its funny....I had one of those and it wasn't.....
Love you all mucho.....A n K
PS....we have a huge lilac bush next door....very convenient.......
Thursday, May 02, 2002 at 08:33 PM (CDT)
I've just had my morphine and Keith has set the lap top literally on my lap in bed, so I am really quite confortable. I'm also back on the steroids again, as of yesterday, and that seems to decrease my pain as well as give me me a lot more energy.
May 1st definitely was a very special day! We participated in a 3-way conference call with our Infectious Disease Doctor, Bob Peskind, and a panel of 4 members of the appeals board of the Colorado Blue Cross Blue Shield InsuranceCom[any. They have refused to pay for $8000 worth of an IV antibiotic drug..given to me after Vancolmycin became ineffective. Zyvox was the one drug that actually contributed to the cure of my back infection. Well, thanks to Dr. Bob's persistance, we were at the 3rd level of the appeal which is usually when everyone gives up. After 2 hours of deliberation, they called us to say they "reiewed" the situation and have decided to pay the cost of the drug! Can't tell you what a relief this has been for us.....apparently,, perseverance is the key......they say no, no , no until they see that we aren't perpared to give up, then they relent.....Ojala!!!!
Also good news was Tuesday's labs....eveything normal, but the hematocrit was down enough to warrent a procrit shot, which should help me keep my red blood cells up.
The three David Keith Suttons are heading for DIA manana....Trey to drive them to Denver, Keith and David to fly on to San Antonio to pick up "Trotski", now parked in Tim's garage. They will do a turh around and try to be back Saturday evening....it will be so nice to have our car up here. De and I will batch it on Friday and my sis will spend Saturday with me....Keith has left me with very detailed instructions for my drug dispensing....I will miss him mucho.
Niki sent Keith a gift certificate for his birthday from Amazon and he willingly shared it with me....I ordered Billie Holliday and he order Norah Jones.....we are both happy with our choices, funny how I ordered an old classic and Keith choose a 21 year old new comer and we have been enjoying her immensely. Let me quote the lyrics of one of her own songs...it seems so appropriate for where I am now...
The sun just slipped its note below my door
And I can hide beneath my sheets
I've read the words before so now I know
the time has come again for me
And I'm feelin' the same way all over again
Feelin' the same way all over again
Singin' the same lines all over again
No matter how much I pretend
Another day that I can't find my head
My feet don't look like they're my own
I'll try and find the floor below to stand
And I hope I reach it once again
And I'm feelin' the same way....
So many times I wonder where I've gone
And how I found my way back in
I look around awhile for something lost
Maybe I'll find it in the end
And I'm feelin' the same way....
We are still fierce invalids gratefully thankful for all the good things that have happened to us and the multiftude of special people in our lives. Bless you all and keep in touch.....
A n' K
Thursday, April 25, 2002 at 12:41 PM (CDT)
Good Morning Everyone.......and I mean that sincerely.....yesterday and today began with just a minimum of pain, which I regard as a significant change since returning from hospital. My labs were so normal it just had to get better. I managed the entire day without using Ram Das to lean on and even got into the kitchen to make a sandwich.....now, I know that sounds quite basic, but believe me, it was liberating!
Today, we might make ourselves a little trip to the library and promise to have some new photos to show you next week. The centenniel fourth grade knitters came thru for me yesterday with two new night caps that are so perfect I may have to wear them out in public. Linda Danforth took photos of the boys, Seth and Luke and told me they were thrilled that I liked their work....wait until you see the pics.....I might even do an au natural (bald head shot) for those of you curious to see the real me. They both seemed to understand the significance of losing all ones hair as they both had someone in their family who went thru the same problem.....
Linda and Tom Knapp arrived yesterday with the mail and several boxes of goodies from the ex-Casa Sutton,as well as Keith's blood pressure cuff and steth, my Mom's Art Deco light sconces (circa 1939) that framed the fireplace in the sala. I am sure we will find a perfect place for them in our new sala and last but most important our favorite sleeping pillows! It was good to see the Knapps and catch up with the lastest San Miguel news.....the jacarandas are in full bloom, which means the town in blanketed in large spashes of purple.....quite a sight! Wish I was there!
They also had a good three day rain the first of the month, which is most unusual, but really needed. Maybe the rainy season will start early this year for SMA....hope so. If we don't get a full month of rain here in Colorado, we will be faced with a serious draught......think spring and pray for rain.....
The moving process continues....D and D are soooo orgainized everything is coming together and apart and looking smart. They might even have a buyer....before its even listed....I'm not surprised because its such a fab house. Our new address, starting the 15th of May will be 507 Spinnaker Lane, FC, Co. 80525.....telephone stays the same:907-282-8565 and Keith and Angie are proud owners of our very first cell phone! We got our first computer, a toshiba laptop in 1989....were the very first ones in SMA to hook up to the internet but managed to delay owning a cell phone all this time. This is America folks and everyone needs to have one .....you will always be able to reach one of us at 970-222-4752.......Oh happy day.
All for now.....love to each and every one of you....ciao....A n' K.
Monday, April 22, 2002 at 06:15 PM (CDT)
I want to start this off with these wonderful wordst passed on to us by my sister.
People come into your life for a reason, a season, or a lifetime. When someone is in your life for a reason, it is usually to meet a need you have expressed. They have come to assist you throught a difficulty. to provide you with guidance and support, to aid you physically, emotionally or spiritually. They may seem like a godsend and they are! Then people come into your life for a season. Because your turn has come to share, grow or learn. They bring you an experience of peace, or make you laugh. They may teach you something you have never done. They usually give you an unbelievable amount of joy. But. only for a season. Lifetime relationships teach you lifetime lessons: Things you must build upon in order to have a solid emotional foundation. Your job is to accept the lesson, love the person, and put what you have learned to use in all other relationships and areas of you life.
It is said that love is blind, but friendship is clairvoyant.
They dismissed me from PVH around 3pm on Friday and I will admit to feeling quite good.....the entire chemo stay this round seemed easier, less painful and went quickly...my nurses were fabulous and .I had lots of visitors, bearing gifts, new hats, etc.....the prize possesion given to me from Jimmy Danforth: a cap from Joe Cocker's Mad Dad Ranch in Crawford, Co. He mentioned something about maybe getting it back AFTER my hair grows back.....vamos a ver.......am not sure I can part with it.....Linda D gave me a sweet soft little pink night cap, knitted by a fourth grader at Centenniel School. It appears that they are teaching 4th graders to knit and a good job they are doing.....love it.....
As soon as I arrived in the door at 4547 seaway, the pain returned....go figure.....so I stayed put for the weekend and curled up in front of the fire.....it got very cold and wet...today, its sunny and warm and I am doing much better. I go for labs tomorrow to begin testing the official results of this last go around.....we are hoping for some positive changes. Will of course let you all know as soon as I have something definitive.
The hustle and bustle around the casa has been monumental.....packing, packing, packing. It appears that once again, I have been spared a major moving trauma. Keith has been helping in the fix-up, etc. in preparation of the house sale....he spends a lot of time at Home Depot....This house goes on the market on the first of May and we move into the new one on the 11th. That coincides with my next hospitilization and chemo round so I will be out of the way for that.
Keith just got back from the Dr. G's, his Cardiologist, so I will let him give you his latest info.....Love you all and "think spring"......
P.S. Visit to Dr G. was OK. Actually, I'm feeling quite well..... Liberated a few more drugs from the sample closet. Took my vital juice for liver panel and a cholesterol, LDL&HDL to see if any of this stuff is working and not too harmful. Bad news is I'llo probably have to take this handfut clear into my old age. As above "love to all, and think spring.
A n' K
Sunday, April 14, 2002 at 11:45 AM (CDT)
Dearest Ones.......
Angels have left the library (According to the movie "Wings of Desire") and are out and about doing good deeds. My tennis buddy from way back Mary Nemeth offered us the use of an almost new car until ours arrives! Think of the freedom that has allowed us....perfect timing as well, since there is lots to do before checking back in to Poudre Valley tomorrow. She turned out to be the mystery posey deliverer as well. Her hubby Dr. Cliff , who still is a top rated tenista, was chosen to carry the olympic torch thru loveland. We had such fun with them in the old days at "Sunday Services" out at the Sutton farm.....
And dear Tim will be driving "Trotski" back from SMA this weekend and storing it in his garage in San Antonio until David and De can set aside a little time to fly down and drive it home. They would like to see a few sights while there. Thanks Tim...I believe Shamans hang out in the rain forest, but there might be a few in the library.
Shari shaved my head this week and took us out for a lovely lunch. Also made some good CD's to listen to when the chemicals start coursing thru the body. There have been drive-by feedings all week, which has saved the group some time off from the kitchen.....KJ Sutton"s famous Louisiana Red Beans and Rice and Jennifer Monath's scrumptious Italian pasta and salad. Double yum! Of course all of our family has been there for us....and once again thanks to Niki Honey for setting this all up...and keeping me going with her humor....don't you just love that picture of Spot?
Tom and Linda Knapp will be arriving in Denver soon, schlepping some of our "stuff" from Mexico....Big question for them is: did they or didn't they buy a casa in San Miguel?....word was they were looking very seriously.....its only a matter of time before a special few of us succumb to its charms...as well as idiosyncracies...the latter being the biggest lure....don't you think?
And to Bob and Jenny, for finishing up all those loose ends and details that are so time consuming, but necessary....mil gracias. It appears there is a mass exedus going on...which is natural at this time of year..Dianne and Tom just arrived in Corvallis, swearing never to cross the great Chihuahuan desert again, Jenny left for Spartanburg, Bob to follow in a few weeks, Rosie and Andrew will be up in Texas with family and maybe catching some Davis Cup matches in Houston....Victor and Marjorie heading off to NY and SC to check up on thier parents....Gale and Warren following Knapps to Denver in May....Karen Ray is on her month long trek of El Camino in Spain....boots don't fail me now! The globe trotting Curras haven't indicated to us their escape plans, but they practically live in a resort hotel already and may be content to cacoon by the pool during this quiet time. The arrival of Sara in SMA will perk things up, I'm sure. Especially with Rosemary and Deborah doing a few nights out on the town....order an extra margie for me and dance the night away! Oh how I miss our scrabble games! My chemo brain puts me at a distinct disadvantage, best excuse I've had in a long time for losing to those "word freaks" Jenny and Sara!.
Its been a busy week, more pain than before, so I know I'm ready to go in there and kill some more of those nasty cells.....another angel/shaman/guru is Ram Das...I have christened by walker after him, because we all need someone to lean on and II can't do it without him. By the way, the Denver Film Festival is showing his documentary this month..."Ram Das, Fierce Grace" He is recovering nicely from a severe stroke he had in 1997 and is able to begin a bit of a lecture circuit again....watch for both. My dear brother Richard sent me a copy of his last book...mostly about aging and coming to grips with our mortality.....highly recommended.
My sister Maria and I spent a lovely afternoon in our sunny courtyard last week and commiserated about our good fortune with how our children have blossomed into such nice people. Not rich, not famous, just good kids. Couldn't ask for anything more....she left me with a very poignant message which I will have Keith include in one of his updates next week. stay tuned....
Now for the most fun news of all.....we: D&D&A&K have found the perfect home to share.....we are moving fast.....don't want it to slip away.....Its in the next neighborhood over, it has a lovely apartment at one end of the casa for K and I to call our own as well as large roomy living spaces. It definitely has a four person kitchen and we are four cooks. Three actually....I've beentemporarily banned from this kitchen.....accident prone is what they call me. Keith is doing a fabulous job of breakfast and comida and his kitchen skills are improving daily. You all know this: he is my rock, my solid connection that makes the entire ordeal not only tolerable, but in many ways pleasant and fun!
Besos y Abrazos from the Fierce Invalids
A n' K
Tuesday, April 09, 2002 at 04:55 PM (CDT)
Time and circumstance march on. Yesterday's labs were the best they have been in months. RBC& WBC all in normal limits and no need for procrit. This AM had a subcutaneos port {called aptly enough Pas-port} placed at PVH as outpatient. The past few days one of the anticipated events of chemo started. Hair, going, going, gone. Sort of droping off in patches so this PM I took off the rest with my trusty Norelco clipper. The robins should have the softest nests in many a season!!
When we returned from the hospital there was a beautiful bouquet of flowers on the front stoop. Everyone has been so supportive. This certainly has not proved to be a lonely trip. Love to all.
Sunday, April 07, 2002 at 12:38 PM (CDT)
Spring is in the air.....David is going golfing, De and Keith will work in the garden and I will lay in the hammock and supervise.
We went to a wonderful house party last night....stayed until 10! We celebrated Mike Power's retirement from the director of the city of Fort Collins Culture,Library and Parks and Rec.division.... He and David have been friends since high school. David and De brought Mike and Myra to visit SMA last April....some of you remember the great party they threw for us at the Baeza 1 house.
It was so great to get "dressed up" and go out. We even indulged in the forbidden glass of wine....slept like babies.....
Prudi Scott sent me a sweet little book by Susan Hyde" "No More Bad Hair Days"....a woman's journey through cancer, chemotherapy and coping. It came just when I needed it....add it to your gift list to friends with cancer, along with "There Is No Place Like Home by Vickie Girard.
A big thanks to Bob for taking my treadmill over to Los Palmas for Joseph to use for his rehab since his motorcycle accident. We know he is in a lot of pain, and hope the treadmill allows him an easy way to recover his strength. You're in our thought dear ones.
My main caregiver brought home a new straw hat for me yesterday.....aren't I the lucky one????
A favorite quote from last weeks Westwing: "Happiness is my default position"
We are working on it.
All for now from the Fierce Invalids......
A n' K
Wednesday, April 03, 2002 at 04:39 PM (CST)
Quote for the day is from Ashley Brilliant: " I try to take one day at a time, but sometimes several days attack me at once"
Dear friends,
It sems like each day creates new things to add to the "to do" list. Tues. the 9th Angie is due to visit the hospital for sugical insertion of a central line called a port. This will be as an outpatient. She anticipated staying for the next round of chemo but it actually will start the 15th of April for four days. Her labs taken yesterday were quite good and it appears this first round will pass with minimal discomfort. She still has the pelvic-hip pain but it is mitigated by the loving arms of morpheus. Truely this is like traveling through the tunnel of the unexpected but with hints of what might might lay ahead.
It still appears as if she will go for four rounds of chemo here and then look to a probable trip to Omaha to the University of Nebraska Medical Center this summer for a bone marrow or stem cell transplant. That's where Brian got his stem cell transplant. (When it comes to stem cells, it appears the Bush administration wants to impede this research. They are joined by the Papa in Rome as well.)
We may be repitious on much of this but it occupies so much of our thoughts. Bottom line, so far so good. Keep those card and leters coming, they are good therapy. Our other therapy is bread making....D & D have a fabulous machine in which you simply add all the ingredients and turn on the switch....fresh baked bread in 3 hours.....what a country!!!!!
Besos y Abrazos,
A n' K
Monday, April 01, 2002 at 08:33 PM (CST)
Hola Todos........it is so great to be able to write to everyone at once...thank you Niki for setting this up.....and also thanks to Niki for sending me a copy of :"There is no place like HOPE" It has given us marvelous insights into the various aspects of dealing with cancer.
Last week was amazingly busy.....especially since we thought chemo therapy was another term for laying around and being miserable. I am sure that exists as a future possibility,but this first round proved to be quite easy to endure. We spent every day out and about taking care of business.
Monday, I got a walker....need it to prevent falling and breaking a hip, Tuesday I got a handicap parking sticker for the car, Wednesday I got a haircut, Thursday I got a wig (still have my hair, but I'm ready if I need it) and Friday we went to the library to check out books on nutrition as well as audio books for the next hospital go-round. ...near as we can tell, fighting cancer is 50% pain management and 50% nutrition. Thanks to the morphine, I manage the pain just fine, and thanks to the Odwallah fruit smoothies, I can now pass on ice cream.
......
Next round begins on the 9th of April....4 days of heavy duty chemo in hospital.... a special coctail called VAD (vinchristine, adriamycin, and decadron). I receive large doses of dexamethasone, an oral steroid. I take that 4 days on and four days off during the period away from the hospital. The steroids give you a sense of well being and energy to the point I can't sit still. I took the last dose on Friday and then came to a crashing halt for the weekend. ......Bit of a roller coaster ride......r.
I admit to going into this with a bit of trepidation, but with K, D and D, my oncologist, Dr. Madgyesy, and the super Oncology staff at PVH....my fears were put to rest quite quickly. The attack has begun and K and I are ready. Keep those emails coming and we will try to respond to all, e v e n t u a l l y.......
Ciao,
A n' K
Fierce Invalids Home from Hot Climes....*
*Isn't it a scream that Tom Robbins gave his last book that title?.
Friday, March 29, 2002 at 03:00 PM (CST)
COMING SOON!!!...to a computer screen near you........a word from our dear loved ones, Keith and Angie!!
Mom was tired of seeing this same old message, but hasn't had time to sit and update before now. She told me to let you know that they will be writing themselves very soon and let you know just how they are doing..."in their own words". I am going out of town, so I have to bail out of the duties for now. I know you all will appreciate hearing from them, so, hang in there and check back soon!
Thanks again for all your messages and support. It's been appreciated so much!
Happy Easter, Happy Spring!!
signing off til they need me to fill in again,
Niki
Saturday, March 23, 2002 at 11:52 AM (CST)
Angie is HOME!!! DISCHARGED FRIDAY NIGHT!
Last night was ok, but not great. There is still some settling in that needs to happen for them as they adjust to all that is changing in their lives. This is a very confusing period now. It's very disorienting and you feel so disorganized because there are all these new routines, medicines, schedules, etc. Getting those down will come fairly soon, but the hardest part right now is in the waiting......the waiting for whatever kinds of side effects she will have, and dealing with how to treat them and make her comfortable. They don't yet have a feel for "what's normal and to be expected" vs. what is "abnormal and worrisome". In time, this will get sorted out and they will have a new definition of "normal", but in the meantime, your senses are very hightened over every little change. Sometimes dealing with all these questions and uncertainties is hard.....it just leaves you feeling so out of control of your life. I've told them though, that it won't always feel this way. They will eventually gain the knowledge and experience with this and feel like they are more in control of this "new" life. A life that they did not choose, but a life that they will become more comfortable with out of neccessity.
As of right now, Mom is doing ok, but I think she is beginning to feel and notice some of the effects and changes that are taking place. Mostly, right now, from the steroids. They are causing her to retain fluids, so she is now on lasix. It is important that she not get fluid overloaded for so many reasons. I'm not sure which part of the treatment is causing it, but she is also having to be on meds to control her blood pressure now too. She is beginning meds for nausea too, as that may start to hit her pretty soon. Unfortunately, this is all pretty normal. You pump these patients full of these drugs to help rid them of the cancer, but they also cause so many other problems. Then you treat those problems, and they create other problems.....it almost becomes a vicious cycle...after awhile you are treating the treatment! But, it's just the way it goes. As long as you are always on top of everything, most of these things are all treatable and temporary.
I think for the weekend, she is planning on just taking it easy and hanging out. She is supposed to go in for a procrit shot on Tuesday (to help boost her hemaglobin) and then she goes in for labs on Friday. Sometime between now and the next chemo cycle, (which I think is in about 3 wks?) she will probably have this picc line removed and a different type of central line put in. I'm hoping they put in a Hickman catheter.....initially, it's awkward because part of it hangs outside the body, but, it is easier to access without pain and you can shower with it. The central line care is about the same as most of the others......different centers have different recommendations, but for Brian, we were able to do a dressing change every five days, flushing the line every day with saline and heparin. We will just have to see what they chose to put in.
I think that is it for today. I know that both mom and dad really appreciate all of your words of support and love in the guestbook, and it is a good way for them to still feel "connected" to you/us all as they are out of their normal surroundings. If any of you know of someone that we haven't gotten the word out to about what's going on, I would appreciate you passing it along.
All the best and have a nice weekend.
Warmly,
Niki
Wednesday, March 20, 2002 at 10:23 AM (CST)
Thank you all for sending all your best wishes and support to Mom and Dad. I know it warms their hearts and spirits tremendously! It's like one great big collective group hug and I appreciatate all of your open arms circling around them.
I talked to her this morning and she is doing really well so far. She had a great night last night and the nursing staff left her alone from 10pm til 6am this morning. She's not feeling any pain (she says thats because of good drugs!)and she's ready for whatever the day has to offer.
They had a great visit from their dear friends Jim and Linda Danforth (Dads former partner) last night. They brought magazines, a board game, and Linda brought mom some bunny ears to wear in honor of Easter. Mom said she would be sure to get a photo of that to add to the website. That would be cute.......she thinks they would be a nice headcovering for if/when she loses her hair too.....definitely not losing her sense of humor, that's for sure!
Thanks to Jim and Linda too for the loan of your car....."the grocery wagon"!! I know that will help lots toward making them feel a little more independant!
Dad is doing pretty good with his heart condition. He is being monitored very closely and they are tweeking his meds til they feel they've got them just right. Mom says though that in honor of the upcoming Oscars, Dad has had to take a backseat with his medical situation and is now in the running for the "Best Supporting Actor" role, while she has been upgraded to the "Best Actress" category since she is getting a lot more of the medical attention now!! I know he is worried about her, but I hope her attitude and sense of humor will help make things easier on him.
They have a backgammon game planned for this afternoon while they view the beautiful Rocky Mountains outside her hospital window. She said they think she should be ready to get out on Friday or Saturday (I hope by Friday so they can celebrate Dads birthday together at home). Then they will return to the home of their gracious hosts and caregivers, David and De. David and De have made it easier for them to live while they are staying there by moving their bedroom downstairs, and giving up their master suite to Mom and Dad so that they can live, and be more comfortable on the main level. Stairs would be very difficult and dangerous for mom right now, so this will help a lot. Thanks D&D!!! You guys are GREAT! (for ALL you do, not just this!) Mom and Dad send their thanks to you, and everyone who is pitching in to make so many things happen.....Mery, thanks for your chauffering and sweet company. To Bob and Jennie and all of "the blessed angels" in Mexico who took on the task of moving Mom and Dad out of their beloved home so that the new buyers could move in sooner.....as well as handling the real estate transaction, "MIL GRACIAS"!! to everyone (and anyone I forgot to mention!). Mom said "boy, some people will do anything to get out moving!!"......ha ha ha.....sounds about right! I remember the year we moved from the 5th street house in Loveland where we were surrounded in boxes, and Paul and I were doing most of the packing and moving while THEY played scrabble!!!!!! So now they're using their health as an excuse to get out of moving again!! (Really though, thanks to you all for doing that for them!)
Thanks for your phone call Connie, and the good jokes you told to give her a laugh (like the social security one)!! Keep em coming! I know it's a serious time and things are uncertain, but I believe it's humor (and love and support) that get you through sometimes, even more than all the greatest in health care.
They are making a list of all the things they want and need to buy once the money comes through on the sale of their house like a laptop computer and digital camera for starters!......I wish I had the resources to just go out and get it all for them myself. It will happen though, in due time, so I won't worry about it right now. Also, they have started a new email account with Hotmail since their unisono account is due for payment on the 31st of March. There's no point of paying for that account right now when they can have hotmail for free. You can still access the unisono address til March 31st, but after that, contact them at aksuttoninusa@hotmail.com
Mom and Dad send out the message, "We love you all dearly!" I had to finally get off the phone with her as she had some REALLY IMPORTANT business to take care of.......filling out the lunch and dinner menu for the day!!
Until the next update, take care. Thanks again for all of your support!
Niki (the website secretary!!)
Monday, March 18, 2002 at 09:54 PM (CST)
Hello to friends and family who may be checking in. I (Niki)am doing the journal for my mom and dad right now, but as soon as they get the opportunity, they will chime in themselves.
Here is the first report on my mom. She was admitted today for insertion of a picc line and the start of chemotherapy to treat her multiple myeloma. She was initially diagnosed with this last fall (2001), but was diagnosed in stage I which requires no treatment. A patient can "linger" in this stage for years and not really need anything. But, they will eventually progress to the next stage and need to begin treatment. We were all hoping that she would linger in this stage for years, but, unfortunately, it was only months and so it is time to treat.
At this time, there is no permanent cure for multiple myeloma, but there are many treatments available to slow it down and keep the patient as comfortable as possible. One of the things that can happen with MM is that the bones become brittle and it can cause fractures and severe pain. This is the case with my mom. Some patients end up with bone tumors or plasmacytomas. Many patients have been treated and been in remission for as much as 10yrs.......each case is different though, and there is no way of knowing how each one will turn out. Bone marrow transplants are even an option and could be the possible cure, but they haven't been doing them long enough to say that for sure. It is so strange and ironic that she is going down this road......the same road (almost) that Brian, her grandson, and my son, has been down himself. She says that he is the one that inspires her to fight this though.......she says, "if he can go through this, not just once, but twice, and survive, so can I".
Anyway, today was day one of the road to remission and hopefully the end of her pain. She is going to be in the hospital for four days and then continue treatment from home for a few weeks before the cycle starts again. She is doing ok and her spirits are up. She is keeping a great sense of humor about her as well, so hopefully that will help. She should feel ok for about 10 days to 2 weeks before the effects of the chemo begin. I hope that she can be one of those patients who doesn't have severe side effects. She's a pretty tough lady though and she's not giving up without a real fight! I know she will appreciate hearing from you, so be sure to sign the guest book.
Niki
Monday, March 18, 2002 at 12:24 PM (CST)
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