Angels For Sue: Surviving Advanced Kidney Cancer

Just Over Sixteen Weeks

Hello, to all our angels out there. First - as the holiday season is upon us all, I wish you a very happy Thanksgiving, a wonderful holiday season and a very healthy, happy 2008.  Please accept my apologies at being out of touch since the memorial service in July - explanation and some last words for awhile to follow.

This past Monday marked 16 weeks since my mom left this Earth for her everlasting life beyond here. Since the day I said goodbye to her, it seemed that I measured the time in weeks exactly as I did both of my pregnancies and the early days of the lives of both my girls. This is not coincidence, but rather to me, a very natural part of the process called the circle of life. The person who gave me my life left me way too soon. I imagine she measured the early days of my life in weeks, as well. When I say it out loud (or write it down), it highlights what a short time it has been since we said goodbye. I remind those kind souls who try to offer encouragement - they tell me that I should be feeling better, should be getting on with my life, my mother would not want me to be going on this way and would be downright angry about it (they are indeed right) - it has been barely over a trimester of pregnancy. For me in my pregnancies, reality started to set in about the second trimester. The "high" was over. Clothing stopped fitting.  Furniture needed rearranging to make room for the new member of our family. Things needed to be purchased and others needed to be given away. Our lives needed a hard close look in preparation for what was to come. The parallels are uncanny to me as I go through the same exercises saying goodbye the the person who gave me my life. Not only is there much to be done administratively, but much more to be done emotionally. I imagine it will take me the full length of a pregnancy and beyond to do this work. Just some thoughts to those out there who may have suffered a loss - do it your way and in your own time. Not other's.

Despite my best intentions, I have not updated since my mother's memorial service in early August as things began to blur together around that time. Honestly, I do not remember much of that day except that the chapel at Holy Cross Hospital was filled to capacity.  And the words that were spoken about her were truly from the heart and illustrated how she touched so many lives in so many different ways. Out of respect to mom and knowing she'd want us to thank as many who attended personally, we stood in front of the chapel and shook hundreds of hands. It was obvious to us that day that my mom touched many many lives. What a beautiful tribute to an amazing person. Her untimely death devastated a lot of people. Being where I am now, I can only again say that everyone needs to grieve the loss of my mom in the way that is best for them. Some need to forget it, others need to dwell in it and all the places in between. Wherever you are in the process, thank you so much for caring about her in the way that you did and continuing to care about us.

So where are we now? Facing holidays without her that will be more painful than the deepest cut. Facing the first round of birthdays - ours, our children's and hers - without her will be excruciating. I'm told the initial round of "firsts" is the hardest and after that it gets easier. I guess we'll see. Mom's house has been sold. Generations of family possessions that we never expected to be looking at in our own homes have indeed found their way to either Northern or Southern California.  Mom's beloved little car is with me. The girls and I open the sunroof on a daily basis, look up at the sky and tell Mocko that we are taking good care of her car. My grandmother's piano sits in my sister's living room and my nephew (who is quite the budding musician) "tickles the ivories" as my grandfather used to say. Mom's dogs are being loved by Dr. Evatt and Vickie. It gave her such peace to know her pets would be okay.

In the midst of the administrative details and the sadness, I believe our work in the months to come will be in making sense of what happened to mom. There is much still that we do not know or understand. Shortly after mom's death we learned that we were on the wrong path to save her life. The individuals taking care of mom in her last days believe that she actually had two cancers, not one. She had a cancerous tumor in her kidney that was removed shortly after her diagnosis and it was apparently confined there. What was in her lungs at the time she was diagnosed wasn't kidney cancer that had metastasized, but instead lung cancer. It seems all along this journey unbeknown to us, we were chasing the wrong thing. We are devastated and confused - it makes the healing process all that much harder. Nonetheless, our cancer journey revealed many blessings - new friends, renewed relationships and an awareness that no matter what the obstacle that is placed in the way - determination and lots of love can give one energy and strength that they never knew they had.

In the wake of the new information about what disease actually took my mother from me, I've learned that I have an uncanny gut instinct and a gift for advocacy. During this journey, when I went with my gut instinct and advocated based upon it, I accomplished great things for my mom. When I went against my gut instinct and stayed quiet when I needed to speak up, it cost me. In the case of pursuing my initial concern that what was in her lungs and kidney actually were the same thing, I took the words of others who I thought were more knowledgeable than myself at face value and ignored my screaming gut instinct to push further. I didn't want to make things more complicated for mom or slow things down when she already felt they were moving too slowly. Ignoring my gut instinct in this case I am certain cost me valuable time with my mother. I believe that we'd have at least had this next round of holidays together if not more time. I will never again distrust my gut instinct.

Probably the biggest learning throughout this journey and the thought I will close with is this one - understand the fragility of this thing we call life. As the holiday season approaches, I will offer this "aha" of mine in the hopes that something good comes out of it - know today could be your last day. I'm not talking about the flowery thoughts that you get every now and again when someone forwards you a story on your e-mail. I'm telling you the truth. Tell people you love them. Go see them as often as you can. Mend fences. If something like a serious health problem arises with someone you love - DO NOT WAIT. It is as easy as jumping in a car or booking a plane ticket and clearing your calendar for 24 hours. It really really is. And if you think you need to wait for an invitation or that you might be intruding, I will assure you that you probably aren't.

Our best friend was diagnosed five years ago with a serious advanced colon cancer. Initially we thought it was caught early. I wanted one of us to fly to Boston to be with him. He said "no" probably because he didn't want to inconvenience us and maybe he didn't think he needed anyone around. During the surgery, they found the situation to be drastically more serious than initially thought. I called the airlines and had my husband booked on the first flight out the next day with a return 24 hours later.  I did this on the advice of a very wise friend who said we needed to take the decision out of our friend's hands and place it in our own. He was facing a life-threatening diagnosis. At that moment, we as his best friends knew better than he did what needed to be done. My husband called him and didn't ask but rather told him "I'll see you tomorrow." To which our friend responded "You will??!!! Great!" and hung up the phone.  The next day they had a wonderful and very necessary, but short visit. We returned several more times throughout that year.

During her last days, my mother appreciated the visits from those she loved most in the world, yet she was keenly aware and spoke of those who she knew she'd never see again and hadn't seen a long time even before she was diagnosed with cancer. I'm so very sorry I wasn't able to get those people who she wanted to see to her in time despite my best efforts. I'm sure I gave mixed messages of optimism and fear because that roller-coaster was our reality for most of the battle and for that I'm sorry. The message here to those who can hear it - please don't wait. Life is short. And seeing someone for the last time (whether you feel the need to or not or whether you think you can or not) and making it special is sometimes the greatest gift one can give another person. I wish people could have seen mom's hospital room in those last weeks - there were white tablecloths, china and crystal. There was wine and festive conversation. One of the consultant physicians on mom's case seemed to always visit during these mealtimes. He said it was something he'd never quite witnessed before in his professional career. My uncle was one such visitor and the reason for one of the festive events I described - he offered the good doctor a glass of wine and a chair. We knew the doctor was just being professional and polite by declining the invitation. To those who made it to see mom, I thank you from the bottom of my heart - you gave us all an incredible gift.

I will close for now by thanking all of our angels who have been there throughout this journey. I've added some sections to the blog including  inspiration and a new section called "Taking it on the Road". The inspirational blog sites are those of friends I've made during this journey. Their humor, insights and determination have kept me going. I've also offered some of what we learned by "hitting the road" and how traveling all over the place for mom's health care had its good and bad and how being organized with medical information and records can really help.

We will continue to miss our mom and wonder where she is. My six year old - who has the benefit of a solid foundation of faith that only starting in earnest at youth can bring - is absolutely certain. Almost daily, she clasps her hands and looks up and says - "Mom, she's in Heaven of course." My daughter has this genuine look of true happiness and joy in knowing that my mom has made it to the place that she thinks we all hope to go some day. I've only seen this kind of deep faith one other time in my life. To those who knew Elsie - the angel who came to help my grandparents when my mom was three and never left our family until she died many years later - Elsie had this same kind of faith. When she'd get the news of someone's passing, she clasped her hands and looked up with a smile that looks just like my daughter's (who is Elsie's namesake). Elsie always knew that where we were going was a far better place than where we are now. So on my saddest days, like today, when I wonder where mom is and how she got there, I close my eyes. I see my mom going into a ray of light. There at the end of light stand my great grandmother, my grandparents, my brother, my cousin, friends and family and, of course the animals, who have gone before us. Elsie is standing in front of all of them with her arms out and when my mom arrives, Elsie hugs her and says "Susie, welcome. We've been waiting for you."

Blessings to everyone. It has been very quiet since mom's memorial service. We miss you all very much. Please stay in touch.

Thanks to you all for reading....debbi

Hello to all of our angels.  Yesterday was one week since the ending of my mom's journey here on Earth and the start of her new one beyond.  For me, it feels like yesterday and the images of our last moments together holding hands and resting cheek to cheek remain etched in my heart and mind. I doubt that they will ever leave me, but I'm told that time softens the pain of those wounds just a little. I am trying to take comfort that she is now out of pain and suffering and watching from beyond gently guiding me on the things that I need to do now.

With the help of some very close friends of mom's and mine arriving the day after her death, we began to focus on what comes next.  In that context, I prepare this update...what must come next is that we offer the opportunity to ourselves, our family and friends and the many, many patients at the office to celebrate my mom's life here on Earth and wish her a safe and happy journey into the next phase of her life beyond.

The celebration will take place at Holy Cross Hopsital Chapel, Commercial Boulevard and Federal Highway, Fort Lauderdale, Florida on August 4, 2007 at 1:00 p.m. There will be a reception immediately following the service. More details on that will be announced at the service.

There have been many questions regarding where we would like contributions made in honor of our mother. We have selected the organization Action to Cure Kidney Cancer, (212) 799-4354; www.ackc.org/donate ; 150 W. 75th Street, #246,  NY, NY 10023.  This organization was chosen because of the work that they do with the pharmaceutical companies and with the government to raise awareness about kidney cancer and work toward more funding for research for treatment options. Our mother left this Earth with the knowledge that by virtue of the fact that this disease attacked her, her direct first-line relatives, that being her sibling and her children stand a 60% greater risk of being attacked as well.  It is her hope and ours that should that ever happen, that there will be better treatment options available to us than there were for her.

I have updated our blog with some new information in our categories including our experience with obtaining a new drug pre-market release from a manufacturer. I also included some of the wonderful articles that have appeared in the local newspapers honoring our mom.

I will close as always....we believe that there are angels walking among us here on Earth. Thank you for being one of our angels.

Debbi

July 14, 2007:  To all our dear angels - those we know, those we don't and those whom we've met along the way.  After the passage of almost one full year since the day mom was diagnosed with advanced kidney cancer, mom lost her battle on Thursday afternoon, July 12. My sister and I were with her holding her hands when she drew her last breath and only at that moment did we give up hope for a miracle.  The pain and difficulty breathing had recently become more than mom could bear and she asked that we accept her decision to go on to the next phase of her life. She said earlier this week "I am confident that you girls will be in good hands. I would love to stay and play and have more time together, but it is time for me to go. I love you." While we supported her choice we remained hopeful that we would get our miracle. 

It is important to know that mom died trying. She received two doses of the recently approved drug, Torisel. With tremendous diligence, determination and some guidance from one of the doctors who studied the drug, an angel in his own right who has never actually treated mom but just wanted to help, her new oncologist was able to get the medication from the manufacturer prior to its release to the marketplace. Sadly, it was just too late.  During this last hospitalization, we continued to meet many angels - our new doctors - particularly our oncologist, nurses, nurse's assistants, respiratory and physical therapists. Mom and our journey continued to touch people's hearts. We are grateful for the kindness and good care that we received during our final part of this journey.

Words can not adequately express our thanks to all of you for your unwavering support over this long year.  Mom was truly overwhelmed by the tremendous efforts of all of you to keep her feeling encouraged and loved. We were many places during our journey but no matter where we were and due to all of you, there were always gorgeous flowers, wonderful things to eat, cards, care packages and lots of phone calls. It is hard to maintain the emotional energy to support someone else who is very ill, especially for a long time. Our angels were exceptional in that way and we want you to know how much that truly mattered to all of us.

There were tremendous lessons that we learned this year about love, life and hope. There are a few revelations that we would want to pass on to others, and more that may come to us in the days, months and years to come. One is the fact that our time together on Earth is very short. We must appreciate and make the most of every day we have with the ones we love. From the day mom was diagnosed, we tried to do something special and fun every single day, especially in our last days together. And we said "I love you" all the time and for no reason at all. Tell people you love them or how much they mean to you. Don't wait to visit people who matter to you - Ilene and I now know that a long distance is a perception, not a reality. After the first few trips to Florida or the first few drives from Northern to Southern California, a coast to coast or north to south trip became as simple as packing a bag and getting on a plane or in a car.  When you love someone, mend your fences and let most things go. Make that phone call to say "I love you" today, not tomorrow. Send that card. Realize that if you don't you may never get the chance all of our collective futures are just very uncertain. That is the way that life is.

Ilene and I are devastated and in shock as we never were willing to consider that this time might ever come. To be frank, we did not discuss this possibility with mom although we had a lot of time together that would allow for such a conversation. We tried to remain focused on the positive throughout this entire journey. Now, we have spent the last couple of days paralyzed with disbelief. Please accept our apologies for this late blog entry and for not returning calls and notes.

When we designed this blog for mom, she had two purposes in mind - first and foremost, she wanted to share the things that we learned in our journey that would help others - be it overcoming an insurance obstacle, locating an expert or kidney cancer treatments or choosing the right doctor. The right hand side of this blog has been designed to do that, although lately I haven't had the time to update it with the new information we have learned. In mom's memory I will do this. There are so many of you who have written to me whom we do not know to say that you were helped by this blog or to ask some further questions. Some are newly diagnosed with kidney cancers, others are just looking for information about navigating the cancer journey or the health care system. I've read every one of your notes to mom and she was so very pleased to know that our struggles and learnings along the way have helped someone else. When I have processed through some of my grief, I will continue to update with the many things we've learned in the last month, particularly about getting a newly approved cancer medication from a drug manufacturer. And we will continue to actively work to support kidney cancer research because mom left this world with the burden of knowing that my sister and I are now at greater risk for being stricken with the disease ourselves.

There have already been many questions about when a memorial service will be held and our wishes on flowers and other things. Please know that we are just beginning to sort this out. We've recently learned mom's feelings on having a gathering of those who loved her to celebrate her life are just beginning to be able to think about that. I will send out an update with that information as soon as we finalize plans. In lieu of flowers, mom, Ilene and I would much rather donations be made to kidney cancer research so that there will be a greater chance at life for those who continue this battle or who are just beginning it. We will have more information about that as well in the next several weeks.

We have always and continue to believe that there are angels walking among us here on Earth. Thank you for being one of our angels.

Much health and happiness to you and yours...Debbi, Ilene and Sue

Tuesday, June 12, 2007:

Hello, everyone. My deepest apologies for our absence, both on the blog and in returning phone calls, letters and sending thank you notes for the carepackages, prayers and other gestures of kindness. Specifically, to Jeff, Venetia and Christine - the flowers were stunning and brightened up our days for many on end at one of the dreariest periods yet down at the City of Hope. Thanks so much for all your love and support. And to those who still contribute to the angel acccount - though your identity is not disclosed to us - please know that we deeply appreciate your love and on-going generosity.

Mom has faced many big challenges since my last update and has overcome a number of them. She was hospitalized at the end of April with severe side effects from the radiation therapy that caused malnutrition and pneumonia. She also had a fluid collection outside of her lung called a pleurel effusion. Further compounding things was a condition caused by low albumin (a blood protein) called third-spacing where fluid shifts out of the vascular system and into the tissue of the body causing severe and grotesque swelling of the limbs and abdomen. Numberous infections with unexplained high fevers occurred as well. With sheer grit and determination, mom overcame all of these obstacles. She was discharged from the hospital just after Mother's Day, but was readmitted four days later with an abdominal complication. Within 24 hours, she was rebounding from that event when she then suffered an accidental narcotic overdose. This event set her back, causing shortness of breath and oxygen dependency. Upon the evaluation of the potential effects of the overdose on her respiratory system, unfortunately they discovered that the cancer in mom's lungs had spread.  Moreover, we also sadly learned that the oncologist that we had traveled 3000 miles to see felt that he didn't have any treatment to offer us that wasn't available elsewhere. The decision was made that mom would stay with me in Northern California, get an oncologist here and proceed with treatment. Mom, Ilene and I had a very serious long talk about the direction mom wanted to take. She concluded that she felt she was going to get strong enough to try another drug. She continued to get stronger throughout her hospitalization and after discharge despite the grim forecast offered by her doctors.

Mom made it safely to my house in Northern California after being discharged on June 1.  With the help of some personal contacts and the physicians at the City of Hope, we identified an oncologist with a fabulous reputation. After spending an hour and a half with her last week, she exceeded all expectations!! We loved her. And an exciting new development in the pharmaceutical world occurred just on May 31 - a new kidney cancer drug called Torisel was just approved by the FDA (a big thank you to those who work in research and development of these cancer drugs - you are giving many people hope)!! It is made by Wyeth laboratories and this organization apparently has a program for being able to purchase the drug directly ASAP for patients who need it as it won't hit the market until July nor will it be approved by insurance companies until well after that. Frankly, we don't have time to wait, so mom's doctor is working on getting it now. In the meantime, mom is settling in to my house well.  She's taking long walks, eating healthy food and getting rest. This week, though, she has developed another pneumonia and is trying hard to knock it out so she can start the new medication.

It has been such a long hard road for mom. But when the going has gotten really tough in the past few weeks, she's upped the ante in terms of fighting this horrible disease. The inspiration in large part came from meeting the other patients at the City of Hope. Particularly Sandy and Lynn, affectionately named "The Stem Cell Transplant Girls." Each were in the stem cell transplant program for recurrent breast cancer. And every night during the time their hospitalizations overlapped, they'd come and visit her, even with 11 bags of very strong chemotherapy hanging off their IV poles. She was so in awe of their determination, we believe it was contagious and she re-focused her efforts to get better. Mom's perserverance, courage and dedication to getting her state of health as good as it can be is nothing short of miraculous. She has been so very sick over these past two months and has surprised even the top professionals with her ability to overcome the obstacles. Mom is our hero for fighting this battle so valiantly and Ilene and I are proud to be right by her side.  The road has been long, though, and very hard on all of us.  Mom has commented on more than one occasion that she thinks these situations are harder on the caregivers than the "patient" because in her opinion no one takes care of the caregivers as everyone is focused on the patient.  Ilene and I feel so lucky because we've taken care of each other and we've had our families, friends and coworkers supporting us.

On the subject of caring for the "patient" and the caregivers, I would be remiss for not mentioning my dad and his family who all reside in Southern California. Their support has been extraordinary. My aunt located the kidney cancer expert there for us and has been our medical advisor throughout this entire ordeal. They have been there for anything we've needed. They've broght care packages, gifts for the kids, and dad has made homemade chicken soup. They've fought hours of horrible LA traffic just to pay a 15 minute visit to us at the hospital or to attend an appointment. On Memorial Day, I mentioned to my aunt that mom and I were forlorn that we weren't able to barbecue that day, so she showed up at the hospital with a barbecue dinner, complete with a beautifully set table and wonderful food.  It is only through this recent hospitalization that the three of us have been willing to even contemplate out loud the possibility that mom could indeed leave this world. The scariest and saddest part of that for her is the idea that she would be leaving us behind. She's taken care of us all these years and even though we are grown, to her we are still children in her heart. Knowing that my dad and his family are there to "take care" of us if we need it is a tremendous comfort to her.

On the subject of visitors, as there have been so very many requests to visit, if she is able mom would love it. As we have caregivers staying with us to help mom, space is limited at our house. And because she has a number of appointments on a weekly basis and does get tired, time is somewhat limited as well. Nonetheless, we've got a number of people planning visits, so let us know and I can share information about hotels, lodging and what events might be happening during the summer here in my sweet little town of Auburn. Beware, though, because I'll put you to work. "Little" Beth - who is mom's third honorary daughter and like our sister (we were neighbors and friends since Beth was five years old)  - came from Atlanta last week and was here four days. It was so very wonderful to see her and she helped me get organized as well as paid some extra-special and much-needed attention to my girls. She left her little boys at home and I know that she went home very tired and missing her boys terribly...but for mom and I, the visit filled our souls.

I will try to be better about updating you all. The support, kindness and compassion is so very important to us. This is a lonely road sometimes - the regular reminders from all of you that we are not walking it alone mean more than you will ever know.

Blessings to you and yours.....debbi

Hello, everyone. I was telling Ricardo, one of our angels here at the City of Hope who is the manager of Hope Village, that if the love and support of others was the only measure by which a cure for cancer would be guaged, then we would certainly have been long finished our fight and celebrating victory by now. To all who have sent beautiful flowers, yummy edible fruit arrangments, care packages, cards, phone calls, prayers and, especially those who have made contributions to the very special angel account which is such a source of help right now - THANK YOU!!! In spite of the peaceful atmosphere and wonderful people here, we are all very far away from our homes. It gets very very lonely and to get a card or message from someone we love means more than you will ever know.

Mom is in Helford Hospital here at City of Hope. She was admitted last week following continued extreme weakness. Dehydration and pnemonia are the main issues that they are treating right now. Much like the rest of our experience here at City of Hope, Helford hospital has angels everywhere - the physicians, nurses and other staff exude kindness and care, as well as a true knowledge of cancer.  They are taking wonderful care of mom, and although either Ilene or me or both of us are always right by mom's side, if we needed to leave her we know that she would be extremely well taken care of.

Our discharge date is not known right now, nor is our destination once the discharge date comes. We are truly learning what it means to live right in the moment for any future planning we might do is really a waste of energy right now.  We will likely go to Hope Village for a short time after discharge and then, depending on how mom is feeling and what the treatment plan is we will either have to rent an apartment nearby until mom is strong enough to travel back to Florida or she will come with me to Northen California to continue to convalesce.

We continue to ask for your prayers and positive energy at this critical juncture. Our doctor out here is anxious to start another drug treatment but mom absolutely must get strong enough to be able to tolerate it. That means she must eat, be able to start some light exercise and most of all recover emotionally from the very difficult series of events that have occurred over the last month. 

To those who have called and have not received a call back from one of us, please accept our apologies. We are constantly talking to one doctor or another or we are at home trying to hold together our families.

Address is still: c/o Hope Village, 1500 East Duarte Road, Duarte, California 91010-3000

We believe that there are angels walking among us here on Earth. Thank you for being one of our angels.

We believe there are angels walking among us here on Earth, thank you for being one of our angels. From the day we received the diagnosis, we have truly believed that there are angels walking by our side through this journey. If you are still reading this blog, just know that we consider you one of our angels and thank you profusely.

Reality has set in. Mom is very very sick. She is in excruciating pain. Getting her to eat is next to impossible. Walking is an effort and we think she does it just to appease us. Ilene and I are taking turns being with her as she receives her radiation treatment here at City of Hope in Southern California. She misses her house, her friends and her dogs and wants to go home. Getting her home is what we are singularly focused upon and we reassure her that she is going to get home, she just needs to get the radiation completed and the drug therapy started.  A dear friend of hers is coming for a visit next week and we can hardly wait for that. It will be the highlight of this awful turn in our journey.

Angels are everywhere here at City of Hope. The volunteers, the staff, particularly in the radiation oncology department could not be nicer. If they are running 10 minutes behind schedule, they apologize all over themselves. The care here as compared to South Florida is night and day. Their business here is cancer and they seem to know that patients and their families need to focus upon fighting the disease, not fighting administrative hassles. However, because we haven't had any administrative hassles, the reality of mom's disease has clobbered us over the head like a ton of bricks. Mom is sick and she's in a dog fight right now for her life. I think I've sugar coated that in past postings, but I can't any more. This is serious.

We are staying at Hope Village on the campus of the City of Hope Medical Center. It is a very peaceful place here and if she has to be away from home, mom feels that this is where we should be. The grounds are gorgeous - beautiful gardens of every kind here, manicured meticulously. The cottage we are in is single story and with a patio perfect for sitting outside and we do that every single day. There is a putting green right outside the door. Last week, we got mom to putt six holes. This week, not so far, but we're hoping. The cottages are priced less than local hotels and there is a tram service to take us to our radiation and doctor's appointments within minutes. For anyone ever needing to do something like this, I would strongly recommend considering the on-campus option. It's not fancy, but it is very convenient. We also get to meet other families involved in the fight against cancer, almost like a built-in support network.

For those who have asked for the address, here it is: Susan Friend, c/o Hope Village, City of Hope, 1500 E. Duarte Road, Duarte, CA 91010. We'll be here for two more weeks.

None of us know what is around the corner for us. We learned this eight months ago and continue to have it reinforced on a daily basis. For me, I tell people I love them, I say thank you, I don't wait to see someone I care about if it is humanly possible because I don't know what tomorrow will bring. A recent example of this is Easter. For me, Easter has had great significance. To me, it means re-birth, re-juvenation and a time of great hope. I have celebrated Easter for many years with my friends and family. Before kids, it was a time to have great food, great champagne and great conversation. Now that the kids are in the mix, its focus has shifted a little to Easter baskets and egg hunts. Still, the same people who were part of the celebration in the beginning - the Usual Suspects - remain part of it to this day. Some years we have many, some we have fewer, but every year we have the celebration. This is true whether I was living in the wine country, up in the woods on the Peninsula, in the East Bay and now the foothills. The same core group of people have come to my celebration wherever it has been. I told you I'd put you in this blog and here it is...you will never know how much your coming this year has meant to me. You are my angels.

Thank you everyone so much for your continued support. I will beg and plead for your prayers now that mom gets the relief she desperately needs from the radiation treatments so that she can start another new drug to fight this cancer.

Good health and happiness to you all!

- debbi -

Metastatic renal cell carcinoma - it really is hard to believe that it has been seven months since we heard those words for the first time.  Scary-sounding words, aren't they? And experiencing the words is even scarier.  In the past month, mom's fight has gone to another level. This week we found out that the cancer has spread to her spine. The good news is, the lesions are apparently very small, the bad news is that they are there. This coming week we get to consider a whole new list of options, weigh the pros and cons, and choose a therapy that will include a new drug or combination of drugs and some form of radiation.

Mom's care has been moved out of Miami to City of Hope in Southern California and with Hollywood Memorial as the local care. The specialist with whom we consulted in August moved from UCLA to City of Hope this past fall. After a horrible experience last month, we decided it was time to get out to California and get some real answers as to what was really going on in mom's body. At our most recent appointment in Miami, we had an inconclusive CT scan where the oncologist thought things were okay and the radiologist thought things were not okay. We had a nurse who told us that all the research we had been doing, conferences we were attending and questions we were asking made them feel as though we didn't trust their judgment. That same nurse thought mom should address her back pain by increasing the pain medication instead of studying further to determine the cause. The icing on the cake was the bone scan that was reported as being "fine" and read by our expert in California as warranting immediate further study...this coupled with lost brain scan results, a bone scan order that was never sent, three weeks of begging patient advocate's office on a daily basis to obtain copies of medical records that were guaranteed within just a "couple of days" indicated that it was time for us to move on.

Amidst all the difficulty, we did celebrate a monumental event on February 23 - mom's birthday!! This was a very special birthday as it was one that we most certainly did not think we'd get to see seven months ago. We took mom away overnight and had a very special dinner with mom's closest friends. Ilene flew in as a surprise. She smiled from ear to ear for the longest period of time since her diagnosis. It was a truly joyful experience for us all.

We are so often asked how we are able to keep up the fight - where do we get the energy? As we said in the very beginning of this journey to save mom's life...we believe that there are angels walking among us here on Earth. Everyone of you who takes the time to read this blog, to send a card or gift, to give a hug, to bring a meal, to drive mom to an appointment or the airport, to rearrange flight reservations, to make a contribution to the Angel Account, to render medical care in a competent and caring way, to donate blood for surgery or for the testing of stem cells, to listen to me vent and give me advice, or to even take a moment out of your day to think a positive thought for mom and her fight - you are truly the angels and with your collective support we are able to continue the fight because of you. Please know that you all mean so very much to our family and that we thank God for you every single day.

As I refer to angels on Earth, I think of mom's very special angel watching out for her in Heaven. Her partner in the fight against cancer, my cousin Scott, unexpectedly passed away last month, just days after returning from a wonderful visit to South Florida. Scott has been the pillar of strength in his fight against recurrent colon cancer. Not only was he dedicated to his fight against cancer, but he also was just as dedicated to pursuing his passion of skiing and ski instruction. Scott was an inspiration to us all and especially mom. She misses him so very much. Heaven has just received one heck of a spunky angel up there, most likely shaking things up and continuing to do things his way - just like the Sinatra song.

I close by asking that if you have any spare energy for special prayers, positive thoughts or positive vibes, please send them West this week to City of Hope. We need all the help we can get as we continue on this journey that has come to a new fork in the road. Please hope that we are able to choose the right path towards optimal health for mom.

Thank you so very much.....debbi (and Ilene)

February 11, 2007:  Prayers, positive energy, positive thinking, PLEASE! On February 15, mom has her scans and on February 20, we have a very important appointment in which we will review our true first set of comparative scans since mom's surgery and three months of drug therapy. Kidney cancer does not have the benefit of a blood marker test, so the only way to truly know if treatment is working is to do a set of CT scans of the body to see what the remaining, if any, cancer is doing. For those of you doing positive outcome visualization, as Ilene and I are trying to do, there are two very real possibilities (1) that the combination of the surgery and drug therapy has resulted in a complete disappearance of all visible signs of cancer or (2) there has been a significant decrease in the sites of metastasis (lungs and mediastinal nodes). The last of the positive possibilities that isn't as good as the first two but that we'd be happy to accept is what they call "stable disease" - that is, things haven't changed much, but they haven't gotten worse. We thank you in advance for any prayers or positive energy you can give us on February 15 (the day of the scans) and on February 20 (the day we get the results) - we truly believe its power.

Since the last update, mom has been busy taking her health into her own hands. In January, mom had her first Toyohari appointment.  Remember this is the form of Japanese acupuncture that we believe completely cured my uncle of advanced stomach cancer. My mom has been attending weekly treatments since then. Again, we will know how well this is working with future scans, but it is empowering to take her treatment beyond the traditional Western methods of surgery and chemicals and get closer to the mind-body connection that this complimentary therapy can offer. For more information about Toyohari, see their website at www.toyohari.org.

At the end of January, mom and I attended a Kidney Cancer patient meeting at MD Anderson in Houston, Texas. This meeting was sponsored by the Kidney Cancer Association as well as Pfizer, the manufacturer of the drug that my mom is currently on, Sutent. There were expert physicians, a nutritionist and a complimentary medicine specialist who discussed current and future treatments in this horrible disease. These folks were gracious with their time and spent a significant portion of the day answering questions from the audience. Perhaps the best part of the meeting (other than getting to reconnect with our cousins Sally and Ed who graciously hosted us in their home) was spending lunch and some time after the meeting sitting and talking with other patients. Many of the members of my on-line support group attended the meeting. Putting a face on this horrible disease is powerful. Cancer is a formidable foe and those fighting it are true warriors. Speaking of faces and awareness, a member of my support group, who just lost her father three weeks ago, prepared a Kidney Cancer Awareness photo gallery - if you want to see the face of this disease (and my favorite four generations picture of our family - we are toward the end), click on this link http://kctreatment.info/.  In the pictures you will see mothers, fathers, daughters, sisters, brothers, grandparents and so much more to so many people. They are climbing mountains, flying planes, running marathons, walking their daughters down the aisle all while they wait for medical science to give them hope. They work to raise awareness in their communities and worldwide. They are my heroes.

Mom has tried some support groups and has slowly found the support that works for her. The Houston meeting was amazing in that she now knows that after meeting the over 150 attendees that she has partners in her fight against kidney cancer all over the world, literally. She also knows that a part of medical science is working furiously on improved treatment options and that a breakthrough is around the corner. In addition to her kidney cancer partners, she and my cousin Scott have formed their own support group duo. Scott is another cancer warrior like mom battling recurrent colon cancer. Scott has true grit and determination in fighting this fight that is contagious when you talk to him. On good days, Scott loves to ski and he maximizes those opportunities recognizing that filling one's soul with positive energy is a key to fighting cancer. Scott also rarely misses an opportunity to spend time with family and close friends whenever possible - another way of filling the soul. Mom, Scott and others who have or are battling cancer are true partners in this journey and gain a lot of strength from sharing experiences and supporting one and other.

After the appointment later this month, we are going to sit down and evaluate our next steps. We had mentioned in our January post that we were considering a stem-cell transplant as an option. We did proceed with testing of mom's blood and her donor, but unfortunately they were not a complete match. Therefore, we must consider other treatment options that have longer term success rates and less side effects that the Sutent has. We hope that the Sutent has changed mom's state of health for the better, such that we have more treatment options to consider at the end of this month. We'll keep you updated.

I have added items to the categories to your left entitled "Important Kidney Cancer Links" and "Suggested Reading". Be sure to check those out if you are a kidney cancer or cancer patient interested in more specific information.

Until next month take care of yourselves and your families and be well. As always, thank you so much for reading our blog and for your continued love and support. We could not have made it these past six plus months in this fight without your collective efforts. Again, our deepest thanks.

-debbi-

Holiday Update, New Year's message and what's next:

• Season's Greetings and Happy New Year to all! It has been awhile since the last update. We hope that your holidays were happy, healthy and spent with the ones you love. We pray that the new year will bring positive changes to our mother's condition and renewed health for all. One of my New Year's resolutions was to assist Debbi with the blog updates, so here goes!!!

• 2006 ended with some positive developments, in that mom did well with her surgery and we got to spend Thanksgiving together. Also, we prevailed in the long-awaited, much delayed appeal of mom's HMO's denial of payment for the August consultation with Dr. Figlin, the kidney cancer expert in Los Angeles. After reversing the initial denial, the HMO has agreed to reimburse for the cost of the visit to Dr. Figlin. But the victory is a hollow one of sorts, since the HMO has made it clear that it will not cover any on-going visits - at least not without another fight. Nevertheless, we accomplished what we set out to do, which was to send a strong statement to the HMO that we will assert mom's rights under the coverage contract whenever and as frequently as necessary. I can't state strongly enough to our friends, family and readers of these updates - if you are faced with an insurance coverage problem like our mom has endured, you need to fight for your rights early on and continuously in order to receive the care to which you are entitled under your contract.

• In mid-December, mom flew out to spend some time with Debbi and family in Auburn, where she was immediately immersed in holiday cheer to try and chase away the Sutent blues. Mom resumed taking the Sutent after a several week hiatus to allow her to recover from the second surgery. The dosage was reduced from 50 mg. to 37.5 mg., due to the severity of the side effects that she experienced in the first cycle. Moreover, the recovery from the second surgery has been slow. Mom still needs to do daily dressing changes and the incision site is still tender and will be for awhile. Despite this discomfort, she really enjoyed being with her children and grandchildren even though four active grandchildren whose ages range from one to six could be a handful at times! Debbi sought out all kinds of festivities for them to enjoy as her neck of the woods is all about celebrating the holidays the old-fashioned way! I came up to Auburn on December 23, with my family and we stayed until the day after Christmas. Our Aunt Claire, who is our father's sister, joined us for a few days, which was really nice. On December 26, mom, debbi and the girls followed us back down to Southern California, where mom remained at my house for a few days until she flew home to Florida. The night before her departure, I took Mom out for a lovely dinner at a wonderful restaurant on the beach. We thoroughly enjoyed the ocean view, dinner and a martini and the best part was that mom was able to taste and enjoy everything! But just like Cinderella's carriage turning back into a pumpkin, her taste buds resumed their Sutent stupor the next morning rendering tasteless the breakfast that Debbi had prepared.

• Mom took her last Sutent pill last Wednesday and then a miraculous thing happened the next day. She RETURNED TO WORK at Dr. Evatt's office for a few hours on Thursday. They needed some extra help so she went in and saw several patients in the afternoon. It was amazing for her to see Dr. Evatt, her other co-workers and the patients, who have all been so supportive during this fight against kidney cancer. We are so appreciative of Dr. Evatt's office for the warm welcome that mom received.

• As far as what lies ahead - Mom is scheduled to have her first Toyahari consultation and treatment on January 23. I will be flying to Florida to attend the appointment. As mentioned in earlier entries, Toyahari is an ancient form of Japanese acupuncture. We are hoping that - at a minimum - it will help alleviate some of the painful and unpleasant side effects of the Sutent. Of more significance though, is that Toyahari treatments actually cured our uncle of incurable stomach cancer 18 years ago. His treatments were provided in Japan by a famous practitioner who is now deceased. The practitioner whom I located in South Florida actually trained in Japan, so we are hopeful that these treatments will have the same curative effect on the remaining tumors as our uncle had.

• Next, Debbi and Mom are planning to attend a kidney cancer patient meeting at M.D. Anderson in Houston, Texas at the end of this month. Leading experts will present information on the latest kidney cancer treatments. We continue to hope and pray that the Sutent is working, but we won't know how effective it is until  the next set of scans scheduled now for mid-February after being post-poned for a variety of reasons.

• Because the disease is so rare and unpredictable, we need to stay ahead of the curve. A new drug will be coming on the market early 2007 that is supposed to be more effective than Sutent and with less side effects. Also, Mom and a donor are undergoing testing now to determine if she may be a candidate for a stem cell transplant. First step is to determine if she and her donor are a match. If she is lucky enough to be a candidate and chose this option, she would have to undergo a 90-day treatment in either Betheseda, Maryland at NIH or at City of Hope in Duarte, California.

• What can you do? Since we believe in targeted positive energy and prayer, please visualize or pray for the Sutent to shrink the remaining tumors, for the FDA to approve Terisol ASAP and for mom and her donor to match.

• I want to thank all of the friends and family who have provided unending support in the form of letters and cards, meals, telephone calls and monetary contributions  to the Angel Account. It is unlikely that any of the new treatments that we will consider this year will be covered by insurance, so we again can't thank you enough for your generosity that will enable us to fight this horrible disease with more weapons. Many of you have asked about how or when to make contributions to the Angel Account. For more information and an update on this, please see the "Contributions" category to the right of this blog page.

• In closing, I again want to reiterate our sincere hope that the information and links that Debbi has compiled and posted on this blog will be a resource to you if you or anyone you know should ever need it. Thank you to our angels for providing all your support through a difficult year that was 2006. Our greatest hope is that 2007 will bring good health to everyone and an opportunity to spend time pursuing your dreams with your family and friends this year. Happy, HEALTHY New Year!

Ilene Mickens

Surgery, Thanksgiving and What's Next: Hi everyone, hope you are well. And I truly hope that you are taking every single opportunity this holiday season to spend TIME with the ones you love and those who are important to you. As I've said so many times before, the blessing (if there is one) with this very serious diagnosis is that we've all become keenly aware of the opportunities placed before us to be with the ones we love and care about - no longer do I wait to place that phone call, send that card or e-mail or attend that gathering just because I don't feel like it or I think I can do it tomorrow. Don't wait on these things, please. None of us know what is around the corner for us - take the opportunities now, while you have them.

Mom had her surgery the day before Thanksgiving. This surgery was needed to correct the incision site from her last surgery as it didn't heal. Cancer is such a smart disease, it literally gets in the way of many normal body systems including affecting the way that wounds heal. Mom's surgeon is a good guy. He was finished in about an hour and sat and talked with us for quite awhile. Our experience at the hospital was altogether different and I haven't even filed a formal complaint yet. But we did need to share bits and pieces of our experience with the surgeon and the pre-op staff. This time around, people were far nicer and attentive. Mom's post-operative pain was controlled very well. And they put us in a beautiful, private room at the end of the hall. We are taking bets as to which of our caregivers were responsible for that or wondering if we just got lucky because there were lots of patients in the hospital that day.

The best part was that mom was discharged on Thanksgiving day, so we got to have our Thanksgiving party as planned. We had friends and family who traveled very long distances to be together on that day. It truly goes to show that if one is determined enough to make something happen, it can happen. We are applying that same determination to our fight against this cancer and some days it literally feels like willing it away will make it so.

What's next? Mom has to take the new drug Sutent that I've mentioned before for another cycle of four weeks, probably starting this coming week. She delayed this current cycle due to some pretty severe side effects - feet that were so painful, she could barely walk and hands that were very painful as well. Since she stopped taking the medicine, of course she feels much better. So the doctor lowered the dosage for this round. We are praying for continued effectiveness of the drug at the lower dose.

With kidney cancer, you need to have your options lined up "just in case". So I've been working a lot on those. They include: a new drug coming on the market in early 2007; Stem cell transplantation from mom's sibling (there is some really good outcomes data on this) and Toyahari (Japansese accupuncture). Research on this disease is cutting edge and changing by the day. Kidney cancer is literally back where breast and colon cancer were 15 - 20 years ago and AIDS as well. Research has come a long way with these diseases and it is making a difference for patients. Kidney cancer research is under-funded. At this time of year, some people make charitable donations for tax purposes. If you are looking for a good place to put these types of donations, consider kidney cancer research. I am thankful every  day for the contributors to research, doctors, biologists and other people who have brought us hope with the new drugs and treatments that we have available for mom. Look at my links under the category "Information and Awareness" for more on kidney cancer research/awareness organizations.

Many of you still ask what you can do. There are so many of you out there that I think the single most important thing is to act as agents of awareness for kidney cancer. Talk to people you know. Get the word out. Talk to people in the media, in the medical field about this sneaky horrible killer. They don't know enough about early detection in this one unlike other cancers. You just don't know with this disease whether its a simple removal of your kidney or a fight for your life like my mom is in. Admittedly, my blog isn't very entertaining and sometimes one needs that kind of reading to catch one's attention and to really "get it". When one reads my blog, you can feel my love for my mom, my unmitigated determination to fight this horrible thing with everything in me, but I'm long-winded and not much fun to read. So I'm sharing an essay written by another person affected by kidney cancer. Her name is Sally Lalone and she is a young woman who is a mother, grandmother, wife, friend and a social worker dedicated to helping others. Sally's gift is in her writing. She's writing about a serious topic but it is fun to read her words. Like my mom, she has a true sense of humor even as she faced the same diagnosis. For example, she made up names for her doctors (like we did, though it wouldn't be right for me to post them on this blog). And, like mom, she thought at tummy tuck would be a great thing to do along with her nephrectomy and suggested it to the surgeon! She describes her experience with this disesase in a way that grips the reader and makes you want to learn more. I've attached the essay under the category to the right of this page under "Information and Awareness - What You Can Do". It is a quick read and a good one and if you want to do something to gain a deeper  understanding of what we are dealing with, please read this essay. At the end you'll ask - "what happened to Sally?".  I can tell you that she's still fighting, just like mom and is funnier than ever. I'm privileged to say that Sally has become a friend and a partner along with countless others in this fight. She's exemplifies the term "Attitude is Everything!!"

Last, I want to thank those of you who have remained in this journey with us. It is so very normal to lose energy or interest in such a thing as serious as this. But we have so very many warriors on our team who continue to call, who send cards and prayers, contributions, good wishes. Some drop delicious food at mom's door. Others send flowers. You can't imagine how much we depend on you for support and appreciate that you are there. Vicky at Dr. Evatt's office has been our tireless angel account manager. For those who have sent in contributions, you have given us peace of mind and some additional weapons to fight this disease that the insurance company has taken away. I have a date (December 13) to have a personal appearance at an appeal hearing where they denied our visit to Dr. Figlin in LA (the leading kidney cancer expert in the country) back in August.  It is sad to say that if you want to survive a serious illness, some times the people with the most resources win the game. That is a devastating testament to the state of healthcare today, but it is true.

This will likely be my last blog update for this year. Mom will be out here in California, God willing, over the Christmas holidays. I'll update you all early in 2007 with hopefully some fun stories of the wonderful things we plan to do while she is here. For us, it will be about seizing every single opportunity to live life to its fullest. It is my wish for all of you this holiday season, along with good health and happiness for you and your families.

We believe that there are angels walking among us here on Earth. By reading this, you are one of them. Thanks for taking this journey with us this year and into the future.

Cheers!

Debbi