archived news updates - October and November 2006

23-Nov-06 - What I Am Thankful for This Thanksgiving (from Liz)

Each year my running Penguin friends would all post what they were thankful for the week of Thanksgiving. I loved reading everyone’s thankful list and this year I want to share with everyone what I am thankful for:

GOD – Without my faith I would not have been able to make it through these past months. Our church has been so gracious to provide us meals for the past 6 months, such an outpouring of love from our fellow brothers and sisters in Christ whom we love so dearly!

Family – My mother…….I think she has already told this story but it is worth repeating. During my hospital stays my mother has stayed every night with me and this last Surgery October 2nd was no different. I was restless one night and put on a meditation tape by Louise Hay and she stated the person who would be taking care of me now was already picked out when I was born and I started crying and told my mom it was her, I was born to her so she could be here today to take such incredible care of me. She has been there every step of the way! My husband is the rock, although he has had his moments. He has been there and would do anything for me, right now each night he helps me with my incision, which is still open in one place and the dressing needs to be changed daily. Taking care of the house and family and all the shopping……… The kids are a blessing and help out as much as they can, Jessica has experienced appointments with me and Andrew wishes he had his license now to help with the driving, he does have a permit. My father who has helped me along the way, he can answer all my ostomy questions since he has had one for 30 years, he is far away but close in heart. Nancy and Yvonne, friends who are family and have come to help my mother take care of me, both have known me all of my life and then some! My brothers, in-laws, nieces, nephews and cousins have been there all they way with me too!

Friends – The four Musketeers are alive and well……..Diane, Kate and Tammy and myself. We have all known each other for going on 30 years and been there through the good times and bad, divorces, death of parents and siblings. They have rallied around me the last 6 months, our first challenge for us, first major illness among us. They are my angels! I have been very blessed through out the years with all the friends I have made, especially my running community. Just look at my website, powered by a dear running friend, Ron! Whenever I go to my website I get tears in my eyes…….the comments are all so incredible and they definitely keep me going, especially when I am down. The cards/postcards I receive at home some have been so faithful as to send cards weekly, incredible!

Work – May sound funny to be thankful for work, but I am. I love my job! I have worked in accounting all my working life and went on to get a degree in accounting and became a CPA. It was two years ago that I joined the IRS to become an agent and I do not regret that decision at all! I have been blessed by incredible co-workers, they have been so supportive to me and they even came and supported my walk last weekend. My co-workers have donated their own leave time to help me through this time. My co-workers are also my friends. I look forward to working side by side with them soon.

Life – I think that one word sums it up! I believe God has a plan for me, my life, my illness has a purpose and I am on the journey to use that purpose, help others, as long as I am here.

Tomorrow is Thanksgiving and I have plenty to be thankful for. There are so many people that have been there for me, so many names I did not mention, but if you are reading this I am thankful for you too!

God Bless and Enjoy your Thanksgiving!

Liz

21-Nov-06 - More pictures posted, a Thanksgiving update (from Joyce)

Liz completed the entire Making Strides Against Breast Cancer five mile walk! She has participated in this event every year since it began and nothing would stop her this year. She had lots of support from friends, colleagues and family who helped push her wheel chair. It was a beautiful day for the walk; the pictures posted on the photo page tell the story.

We celebrate Thanksgiving this week. There is so much to be thankful for. I am most grateful that Liz and her family have adapted to all of the things that have occurred these past months. We are here for one another. Sometimes we share a heart-to-heart talk. Other times we must break a day down to moments and steps. One-by-one making it through an hour or morning or day. When one of us has a melt down, someone is there to scoop us up and dry the tears. We will gather together this Thursday at Morningstar Lane to honor traditions that have passed down through generations. I will include a toast to all of you. Thank you for your faithful support and concern and prayers.

Liz and I travel to New York City next Monday, November 27. On November 28 we have two appointments at Memorial Sloan-Kettering Cancer Center. Liz shared that we will have dinner that night with two Penguin friends (the running kind): We hope to take in a Broadway show and on Thursday we will be chauffered around the city by someone who knows where to go and where to park!

Thanksgiving wishes to all of you.

20-Nov-06 - Liz updates her Journey

On September 1, 2006 Liz posted her "My Cancer Journey" on this website. A lot has happened since then, so today she has brought her Journey up to date, with details on events through November 20. Click here to read this honest and powerful narrative of her marathon for life.

13-Nov-06 - Good News for Liz (from Joyce)

Today we received news that Liz has an appointment at Memorial Sloan-Kettering Cancer Center in New York City on November 28. We are grateful to my brother Dr. John E. Ware, who paved the way for this opportunity. He has personal relationships with doctors at MSKCC. The team she will meet with specializes in research/treatment of patients with non-specific cancer. I will travel with her. I told her to add a few days on to the trip so we can see NYC holiday decorations. I have heard that they are amazing.

Liz is stronger as a result of the blood transfusions last week. Now we will begin planning our Thanksgiving holidays and you can be sure that we will offer thanks for EVERYTHING!

Blessings,

Joyce Anne

6-Nov-06 - Come Walk With Liz (from Joyce)

November 18 is the annual Making Strides Walk in Tempe, Arizona. Liz will participate in this walk and we have formed a team on her behalf. We are asking folks to join our team and either walk with us or donate to our fundraising goals. Volunteers are going to take turns pushing Liz's wheelchair. Please click here to read details. If you are local and want to walk with us we would love your company.

Liz will enter the hospital tomorrow, Tue 11/7, as an outpatient to receive two units of blood. Her hemoglobin is still very low so her oncologist recommended this treatment. I am believing that it will make Liz feel so much better.

31-Oct-06 - New photos posted - Liz and the Pirates

What is the "new look" after the treatments? Blonde again? Brunette? Redhead? Go to the Photo Page and find the answer!

31-Oct-06 - From Liz

Dear Family and Friends,

Even though this will be a hard update to write I told my mom I would do it. Today (Oct 28) I went home from my mother’s house to my home with Mark and it was a hard day. I felt like I was coming home from the hospital again and that was so difficult—so many emotions. But it is good to be home.

Last Thursday 10/26 we (Mark, mom and I) met with Dr. Cavalcant, my oncologist to go over the final reports and recommended future treatment. As stated on page 2 of my pathology report “The staining pattern is not specific for a site of origin, however, the staining pattern would be highly unusual for a colon carcinoma. An endometriod adenocarcinoma or other primary vaginal adenocarcinomas are a consideration.” Translation by Dr. Cavalcant, non-specific cancer origin.

The report also stated that nineteen lymph nodes were removed and are negative for carcinoma. Dr. Cavalcant downplayed this seemingly good news by saying the radiation treatment could have killed off any cells, but if nineteen were tested and nineteen were clear, I like to think this was very good news.

We all asked questions about the diagnosis or lack there of. And once again we were told how rare my case was. Dr. Cavalcant had NEVER seen a report like mine and has absolutely nothing to compare my case to, as well as my other surgeons. It seems I have developed my own cancer, Lizzy Cancer. I am not sure I want my name associated with some new form of cancer. My mom even asked if we could plug in my pathology report into some database and find someone, somewhere that has something similar; Dr. Cavalcant said there is nothing like that.

All three of my oncologists believe that there are still microscopic cancer cells in my body and they all recommend more chemo as a precautionary follow-up treatment. There would be no way to determine the success or failure of the chemo.

Ok here we go…….treatment recommendations. With all the above unknowns, there is a treatment plan believe it or not. Dr. Cavalcant decided to treat my cancer as if it is Colo/Rectal even though as stated above, the path report stated “highly unusual for a colon carcinoma”. Dr. Cavalcant made it clear that there is no “real” treatment plan for me and this is basically a best guess plan and said he feels that NO Chemo is not an option, but of course I can refuse treatment.

Part of the Chemo plan is 5FU, which is something I did during radiation for a week and I tolerated that very well, hardly any side effects. Although Dr. Cavalcant told me that since I was also in radiation treatment the dose was very low, I never knew that, so I would have side effects, the usual suspects: Mouth sores, Diarrhea, Nausea, hair loss etc………

Well, Dr. Cavalcant wanted to add something to the 5FU, something called Oxaliplatin. A newer Chemo used for Colo/rectal cancers. At that point Dr. Cavalcant turned the appt over to his nurse to explain this drug and he left the room.

In comes the nurse to explain this drug and the side effects. This Chemo is so strong that it has to be given in a port and not IV as people were literally having their veins fried by this Chemo and losing their veins. They found that ports worked much better. I would come in for the Chemo on Day #1 and receive the two types and be sent home with a pump and return the next day for more and again sent home with a pump. There is a lot of work involved with this Chemo. The side effects, usual suspects listed once again with an added twist. During the treatment time of four months I am to avoid cold, any cold. No ice cubes, all drinks room temp or hotter. If I open the fridge I am to have special gloves to handle the food. This is the point I broke down and started crying and my mom stopped the nurse; there was much more to explain, but I had had enough. The nurse did not realize that Dr. Cavalcant just gave me a non-diag and told me this Chemo treatment was guesswork.

WHY???? Would anyone subject themselves to this, that is what I asked myself. And with no clear diag and with a guess of what Chemo to use? Would I really put myself through this? Never knowing if it worked? The cancer can still come back with or without treatments.

I have trusted Western medicine all my life; I have always done what doctors told me to do. And I have never really strayed too far and looked into other types of treatments. These doctors have done so much for me and mostly positive and corrective. Part of me feels like I will be letting them down by not going ahead with the Chemo plan. But I have to step back and look into other forms of treatment at this point. It is time for me to take matters, my life, into my own hands.

The tumor was removed, margins are clear and nineteen lymph nodes they removed are all clear. Yet they still want to do more chemo. This is the reality of the world of cancer. Surgeries are done every day, tumors removed, margins are clear and nodes are clear. But doctors still want follow-up chemo. Why? Truth be told, part of my tumor—some small microscopic piece—could have been left behind and could travel or re-grow.

I am going to stay positive and declare that I am cancer free. This is my own affirmation. I just need to heal and live a cancer free lifestyle. I am investigating alternative therapies that can help reduce the reoccurrence of cancer without using chemotherapy. I am looking at a place called Envita. http://www.envita.com My mind is made up. I will not put my body through the recommended Chemo treatment. It is a very difficult decision to make, rejecting the recommendations of my trusted western medical doctors. I feel very strongly that I have to look at other options and consider my quality of life. I am grateful to them for all they have done to bring me this far—removing the tumor, repairing my body and relieving my pain.

Well I made it through the e-mail, with a few tears, I do not like the unknown, but I am ready for the journey!

God Bless and Thank You for all of your love and support!

Lizzy

28-Oct-06 - From Joyce

Liz left Morningstar Lane this morning. She has returned to her home and family. It was time. She needs them and they need her. When she drove away with Mark I reflected upon my life as mother to my wonderful children. My goal has always been to nurture them, love them and light their way. To let go when it was time for them to fly. The time came when they moved into their own lives. They are self reliant children who do a fabulous job of living life to its fullest. I have learned over the years that this was not a one shot deal. The roles kick in from time to time and we turn to one another for help. And let go again and again and again.

For 28 days I have walked beside Liz on her healing journey. The months before were practice runs. I cannot imagine NOT being the one to help her heal. The gift for me is that our relationship is more tender and intimate than at any other time during our forty one years together. I am adding on the months I carried her before her birth! I am blessed beyond measure to have been the one to witness the nights of intense pain, to meet every need that I could, to cheer her on, to hold her when she cried, change dressings and change sheets. I learned how to ask for help. I am reminded of the strength of the human spirit and the body’s ability to function and keep watch with little or no sleep. I watched Liz as she depended completely upon her caregivers after surgery. Day by day she gained strength and remembered who she is. I just read what she wrote in her update. She has evolved to a place of power. She reclaims control of her journey.

Twenty nine years ago I acquired a condition that was later diagnosed as an untreatable, incurable and fatal blood disease. My journey to healing and health depended upon a combination of western and eastern medicine. I experienced the power of commitment to transformation. Today I continue to follow a regimen of western and eastern treatment. My personal experience allows me to believe with all my heart in Liz’s decision to seek alternative and complementary treatment. She has everything to gain and nothing to lose. She has the full support and love of her husband. She has my love and support. Her father is a twenty-seven year cancer survivor and he cheers her on as well. I know that you all gather around her with your prayers and wisdom.

I will take time to reflect upon these past months and ask for divine guidance as I put my own life back on track. There will be times when Liz asks for help and I will be there for her. In the meantime I will return to the task of completing the book I am writing: Ceremonies of Dying: Remembering, Celebrating, Releasing. A memoir of my parents’ deaths. These past months will expand and enhance my understanding of what this book wants to share with others. On November 18 we will participate in the annual Tempe “Making Strides Against Breast Cancer” walk. I think that Liz will be ready to join us. We will need volunteers to help push her wheel chair. www.cancer.org/stridesonline If you are in our area and want to participate, let me know! In January I will travel to Africa with a group of 14 comprised of grandchildren, my brother, niece, son and wife, friends and Alan to do humanitarian work.

Once again I reflect upon my lifetime symbol—the spiral. Endings are but beginnings. Thank you, thank you, thank you for caring. Supporting. Loving. Praying. Believing. Cheering. Reaching out. For running with Liz.

23-Oct-06 - Living in the Dash (from Joyce)

Living in the Dash - this is what we are doing here in Arizona--Liz, her family, her friends. Today I received another email with the poignant story of the "dash." It was a powerful reminder to me that there are no wasted moments and it is the "dash" that really matters. To view the same message I received, please click this link: http://www.thedashmovie.com/

When too many days pass with no update Liz's faithful Penguin running friends drop me an email to let me know they continue to hold Liz close in their hearts and to say "please send us information." Today Liz saw her colorectal surgeon; last Monday she had an appointment with her gyno oncology surgeon. This Thursday we will meet with "Captain Jack," her oncology team leader. Once she has heard everyone's input she will decide whether or not she will go forward with more chemotherapy or follow some other regimen. All of the pathology reports are in. Nothing points to a particular type of cancer in Liz's case. It could be this or that. It looks like several types of cancer. This makes it hard to know which specific type of chemotherapy Liz needs for follow up yet every doctor is recommending more chemo. Captain Jack will make a recommendation. Liz will decide if she wants further chemo. Our job is to support any decision she makes and continue to love and care for her.

Today marks three weeks since surgery. It has been a long and difficult three weeks--three steps forward and two steps back. When she feels strong enough Liz can walk the length of five houses. We cheer her on. She is receiving short visits with dear friends now and these interactions are good for her. She needs to share her story. The more she shares this story the more she will realize how courageous she is. She is still recovering at Morningstar Lane where she gets round the clock attention and loving care not to mention good food! Her wonderful church family brings meals as well as friends from The Longfellow Dental Practice. Last night Nancy and I made some Mrs. Fields Chocolate Chip Cookies! I called for help last Monday and my dear friend Nancy flew over the very next day. That was a big step for me--asking for help. How can I care for Liz if I do not ask for help from others?

Liz knows what she must do to fully heal. There is much that is new to her--much she has to adjust to. Changes in her body. Changes in life as she once knew it. It will take time. She is surrounded by people who love and encourage her--including all of you. Her inner strength may seem distant to her at times. That inner light is getting brighter and brighter. Her hair is growing back. She has a full head of dark hair and we are waiting to see if it is curly.

Nancy and I spent three days planting flowers in my garden. Planting hope. Digging in the rich soil. These flowers will grow and bloom and provide a fabulous carpet of color and feast for the hummingbirds and butterflies. Cycles of life. At the same time we are planting flowers for spring display leaves are falling from trees in other parts of the country. Profound message. A friend from Canada shared this verse:

Autumn
Urge me to drop every leaf I don't need
Every task or habit I repeat past it's season
Every sorrow I rehearse
Each unfulfilled hope I recall
Every person or possession to which I cling
Until my branches are bare
Until I hold nothing fast.
..........
Show me the way of dying in glorious boldness
Yellow, gold, orange, rust, red, burgundy.

Monza Noff

Your gifts of love and blessings and prayers continue to encourage Liz. She faces surgery again in another 5 to 7 weeks. Keep running for Liz!

Blessings and love,

Joyce Anne

13-Oct-06 - Liz is Home! (from Joyce)

LIZ IS HOME. She will be staying with me at Morningstar Lane for a while. She is doing much better; has turned the corner.

12-Oct-06 - Update from Joyce

This is day number eleven since Liz's surgery on October 2. Last night she asked me if I had sent out an update to tell you she was back in the hospital and I told her I had not even let you know she went home on Monday. She was released last Monday afternoon and came home to Morningstar Lane where we had all decided she would spend her first days out of the hospital. After a very long night full of painful adjustments and different symptoms that concerned Liz and me, she returned to the hospital the very next day. Her body was just not ready to leave the hospital. She needs a bit more support for a few more days. There is no reason for her to suffer with horriblel pain when there are medications that can help her. She will remain in the hospital at least for today and maybe one more day after that.

The extensive surgery that Liz had is quite a shock to her system. She faces challenges on all levels--physical, emotional, and psychological. Spiritually she is blossoming and calling upon divine resources. We never doubted the power of prayer and now Liz has experienced first hand how it can make a difference. Things could have gone either way for her. We are absolutely convinced that it is prayer that produced her good surgical outcome.

I stayed in her room with her every night and day after surgery. I do not know how I did that nor can I explain the source of my strength and stamina. It just is what it is. This is why I am here right now--to care for Liz.

One of you sent Liz some Louise Hay CDs--Healing and Cancer. Who are you? One night when Liz was having an especially restless middle-of-the-night spell she asked me to give her all her CDs. I did. She began to listen to them and I took that opportunity to grab a nap. I heard her call me and thought she was laughing. When I went to her bed she was crying and said, "Mom Louise Haye said that before I was born I chose the people who would help me heal. I chose you." I held her as she sobbed and marked the moment as one of the most tender we have ever shared.

I spent my first two nights away from Liz last night and the night before. Each of those nights I slept a good 9 hours so I am refreshed and ready for the next round. Liz is not receiving visitors yet. She said to tell you that it is all right with her that you do not come for visits and hopes it is all right for you as well. She knows that she must reserve her energy for healing right now. Later she will be ready for visitors. She appreciates the cards and knows you continue to pray for her.

I will keep you posted. Blessings to each of you.

3-Oct-06 - Good News (from Joyce)

Liz's surgery was all we hoped it would be. We received nothing but good news last night from her surgeons. All of the tumor was removed, repairs were successful and she tolerated the procedure well. The first few days will be a bit rough but the good news she received will make it all worth while. We felt and benefited from your love and prayers. Thank you from the bottom of my heart!

Joyce Anne

1-Oct-06 - Surgery is tomorrow, Mon Oct 2

Liz will enter Banner Desert Hospital in Mesa, AZ at 7am on Monday morning 10/2. Her surgery is scheduled for 6pm the same day.

 

August and September 2006 news updates

July 2006 news updates

June 2006 news updates

May 2006 news updates