hollyanne

Beth - I pray that he will get some quick relief from the pnuemonia and that will bring some hope back to him. Please keep us posted. I do understand ho difficult this is to watch. Love, Holly

Melinda - Try asking KarHart (Karen) -- They got Medicare in Florida to pay for it for her husband Ken...here is what she told me a while ago... "My husband is a patient at Moffitt Cancer Center in Tampa. We had to sign an agreement to pay for the Avastin ourselves before he could get it (at a reduced price). They then submitted it to Medicare so they could get the denial from them that is necessary before you can apply to the SPOC program. However, Medicare paid it. At first they thought it was an error on Medicare's part. However, when they brought it to Medicares attention they said they had just decided to pay for it for LC since studies had shown benefit." I know you can look into SPOC as well if your mom has it with same chemo from the studies..

We looked into Avastin in Utah -- and it is not covered by Medicare here either. The state administrator makes the decision as to which drugs are covered by Medicare. I know that in this state they are lobbying the admin to have it included as a traditional LC treatment, unfortunately it will be too late for my mom. I thought that it was covered in Florida....I will search my old messages as I know someone on the board is getting it covered in Florida..... Good luck.

Is there a way to get in touch with Mark to offer support? I was shocked when I read this. She will certainly be in my prayers. Thanks.

Brenda - I asked our oncologist neighbor about the Zometa reaction -- he said it should not cause any serious pain, yet some people get bad, flu type pain after the first and second treatments...yet then tolerate it well. My mom had bone mets and terrible pain. We tried lots and lots of things. She ended up doing Duragesic patches (72 hours of medication and very easy to increase or decrease dosage) plus the Actiq Fetanyl suckers and Decradron (steroid.) We were able to get the pain pretty much under control. Once hospice stepped in we went to a morphine pump which was great. She was lucid most of the time, although was a bit out of it when we increased the sucker dosage. Your dad's track record is amazing...I hope it gets the pain under control. Please feel free to PM me. Best, Holly

Dave - Everyone handles the stress differently. Your dad may really be trying to prepare himself. Yet, you do want to encourage him to keep the negativity away from your mom...she needs every bit of positive strength she can get. I believe that everyone's disease progresses differently. For example, my mom never had one lung symptom (no breathing problems, no cough, etc.) yet she had a lot of pain from the bone mets.....I believe that one small tumor in her neck was what eventually took her life as it compressed the spinal cord. You just don't know. There were many times that I thought "this is the start of the end" yet it wasn't.... Radiation is amazing as symptom relief. My mom's hip, neck and spinal pain were excruciating...all three areas were radiated (I believe 10-12 x per area.) In some cases the relief was immediate after the 10th session, in some it took a while -- but radiation will shrink the tumor and relieve pressure on nerves. I am sorry you are going through this. Holly

Hello - Unfortunately, my mom is one who had tremendous pain from bones meds, so I have a lot of experience. The first thing that really started to help with pain was the Duragesic patch which works for 72 hours -- and can be easily increased or decreased in dosage -- my mom was around 200 mg...and she too used the Actiq -- if the Actiq helps breakthrough pain, the Duragesic should be very helpful. As fas as shoulder blade pain goes, it may be another tumor -- and may need radiation. My mom had radiation on her spine/neck and hips over the last months..... Towards the end of my mom's life, we had her on a morphine pump which was fantastic as it gave immediate relief (even quicker than the suckers.) -- I wish she had been on it earlier. Lastly, she responded very well to steroids -- as it appears that inflammation from the tumors were putting so much additional pressure on nerves. Please feel free to PM me, as we tried A LOT of options. Please rest assured, that the pain should be controllable. I know that watching a loved one in pain can be the most hideous part of this disease. Holly

Nancy Nissalke Our loving wife, mom and grandmother passed away on January 7, 2006 after fighting a courageous battle with terminal cancer. She died peacefully at home with her family by her side. Born in Shawano, Wisconsin, Nancy lived a life of service to her family, friends, and to the many communities where she lived. As a teacher of drama and English at Wayland Academy in Beaver Dam, Wisconsin she met her husband to be of 46 years, Tom Nissalke who was the school's basketball coach. Together, they moved across the country living in New Orleans, Madison, Seattle, Houston and Salt Lake City among other places as they pursued Tom's career and raised their two children, Tom II and Holly. Nancy was a woman of great faith, an accomplished operatic singer and theatrical performer, and a true leader who gave liberally of her time to many charitable Utah organizations including the Assistance League of Utah, her PEO chapter, the Utah Opera Guild, the Salt Lake City Garden Club and to Mount Olympus and Wasatch Presbyterian churches. Yet, her family and many deep friendships gave her the greatest joy. Nancy was extremely proud of her husband and her children, not only of their accomplishments but of the qualities they embody. Her energy, compassion, unique style and trust in God were unmatched and admired by all those she touched. In the end, it is truly Nancy's strong faith that gives her family and friends both strength and a sense of peace during this terribly difficult time. Nancy is survived by her husband, Tom Nissalke, her children Tom Nissalke II of Atlanta, Georgia; Holly Nissalke Connolly of San Francisco, CA; and her two sisters Betty Klosterman and Marilyn Schroeder, both of Shawano, WI. Her first grandchild, Caroline Anne Connolly was born on December 20, 2005. Caroline brought a tremendous amount of joy and happiness during the last weeks of Nancy's life. Nancy was preceded in death by her parents Adolph and Bernice Klosterman and by her sister Jeanie Brassard. The Nissalke family offers their sincere gratitude to the caring staff at Utah Cancer Specialists, with very special and heart-felt thanks to Dr, Graydon Harker and to Nancy's longtime friend and nurse Debbie Buese. The incredible support of her friends and church congregations serve as the greatest honor to the life Nancy lived. Nancy will be missed terribly by all who knew her. A celebration of her life will be held at 1:00 p.m. Friday, January 13, 2006 at Wasatch Presbyterian Church, 1626 South 1700 East in Salt Lake City. The family respectfully requests that in lieu of flowers, donations may be made to the Nancy Nissalke Memorial Fund at Wasatch Presbyterian Church. Published in the Salt Lake Tribune on 1/10/2006.

Kimberly - Welcome - I am sorry you had to be here...but am glad that you will get a ton of support and lots of info. I do not know anything about small cell lung cancer - as my mom had NSCLC -- yet there are lots of people here who can help you. Hang in there...the beginning is the toughest part. Holly

Hi - They should be able to use it for the dye...at least they did for my mom. Sometimes if you have to get a scan somewhere other than where they do chemo, etc -- they don't have a tech who knows how to use the huber needle (needed for the port) -- yet if the scan is at the same place you get chemo -- DEFINITELY have a nurse come do it. Your veins are the last thing you should have to worry about. XOXOXOX, Holly

Marie - I'll be thinking about you! If you are going to keep going with "needle type" treatment (i.e. chemo, multiple scans, etc) - you may want to consider getting a port. It was the BEST thing that my mom did....the fear of needles (her veins were terrible) was greater than anything she encountered. Once we got the port, those fears went away. I have faith that your results will be positive. All my love, Holly

It has been one week since my mom left. The memorial service was so beautiful, we had over 350 people -- it was one of the most uplifting experiences in my life, as painful as it was. She was such a woman of great faith and wasn't shy to show it --- that so clearly came through at the service. For all you caregivers, you are truly doing God's work -- you have been recruited! I can honestly say that as painful and terrifying as the last five months have been, I am honored to have been able to take care of my mom -- it was a privilege. Yet, I miss her so much that some of the hours are unbearable.....but I know we gave her the best care possible and that she was peace. I want to thank everyone for all the prayers (please keep praying, especially for my dad) and the support. I don't think I could have gotten through her illness, the birth of Caroline or any of this without this board. I made a committment to my mom to stay dedicated to those who come to this board for comfort and support...so I am not going anywhere. I will post my mom's obituary and some thoughts on her final days under grieving. All my love and thanks, Holly

Cheryl - I feel like we are sisters in this as our loved one's paths have been so similar. Please know that I am here for you. I am going through great grief, but being able to offer you any sort of reassurance would do wonders for me (selfish, huh?)) All my love. I pray that God's will be done and that you will gain peace through this. Love, Holly

She died Saturday morning with all of us with her. I was in bed next to her when she took her last breath. I am devaststed beyond words, but am thankful that her final passing was peaceful. I do not know how I will find the strength to keep going....except that I know that God will carry me. Thank you for all your love and support the last five months. I always thought we would be on the "good side " of the statistics, not on this "side." Yet, we were not so lucky. We all fought a very good and hard battle against this monster. I will write more when I am able. Holly

Teri - I have lots of prayers left with your name on them. I am so glad that you have access to some of the best treatment in the country. I know you will stay strong and fight the s**t out of this monster. Holly

Hi - The PET scan shows changes in cellular metabolism...basically blood flow to areas..... which means you see things before structiral anatomy changes...as you know they will inject some radioactive dye into your veins so that they can see everything in perfect detail. I think the no food, etc is simply done to ensure that your body is in a pristine state to be viewed and to erase the small chance that you may get sick to your tummy from the dye (my mom never did.) Caffeine makes sense as it constricts blood vessels (which you don't want.) --- Hope this helps, it is my layman's opinion...I do know that most doctors want you drinking water as it keeps you hydrated. Someone may have a better answer...but don't be concerend about the no eating, etc. Please let us know how it goes, Holly

Dear Aunt Cindi, My mom has the lumpy/bumpy boobs and has had a bunch of biopsies and other stuff. Everytime she is scared to death and everytime everything is fine...they better be so she can keep the resatuarant open for me. Really, you have been through a lot of junk, I know that this one is going to be just fine. She says that she is excited you will be starting rehab and that you are in here prayers. By the way, this is the first time I have posted anything on the internet....I think dating will be next project, although gotta meet a guy who likes girls in diapers (that is a discussion for another day.) Love, Your 17 day old friend Caroline

Oh Carol - I amn sure that your dad is so proud of you. Please accept my most sincere prayers for peace of mind and comfort for you. I am going through something similar and am too honored to be part of it. Holly

I am sorry that you are here -- but glad you found us. Timeframes are estimates, many, many people on this board have beaten them by months and even years, some have not lived as long as the timeframe given -- you simply can not accept them as gospel -- rather you should ask questions, understand the options -- be an advocate for your dad...and simply love him. The beginning is by far the toughest time -- you feel better as you start laying out treatment (like radiation) plans -- everyone here will give you great info and loving support. Welcome.

FIND ANOTHER ONCOLOGIST! There are great doctors out there who are compassionate and partner with you in treatement -- you need this. This battle is tough enough without someone you can depend on and trust 100%!

Carleen - I have thought long and hard about this..... I found out that my mom was Stage IV when I was four months almost five months pregnant. The stress I have gone through the last five months has been unbearable (well you know what it is like) -- yet when babies are inside of you they are very resilent....I KNOW that she had no negative reprecussions due to my stress....and she certainly has given all of us something to look forward to and cherish -- she has been an amazing blessing. The getting pregnant and staying pregnant part you CAN do regardless of what else is going on.... I would tell everyone I am glad that I just need to eat right and take care of myself...and that the little baby inside of me would take care of the rest -- the tougher part is after the baby is born. I am exhausted, caring for my mom and a newborn --- yet if you have the resources to help you if you are caring for Keith and the baby at the same time -- then ABSOLUTELY go for it. There is never a good time to have a baby. Having help lined up makes all the difference.....and the joy this little bundle provides is impossible to put into words. Good luck. You will do the right thing. Holly

I am so happy for you guys! It is nice to hear some encouraging news in 2006! Here's to plenty more.

Of course you are nervous --- please keep us posted. I will pray that it is just a stupid infection and that you get sleep and peace of mind over the next few days. Hang in there. Holly

FORGET the statistics...you just can't depend on them as every single person is completely different. There are great success stories and tough stories...you just have to be informed as possible and get through treatment. Many, many people with stage IV do well, and loving support and faith DO make a difference. I am glad you found us... you will get not only incredible support here but a great wealth of information. Welcome! Holly

Someone suggested I write a letter to my mom to be sure that nothing goes unsaid -- the one benefit of this terrible disease...is that i know I will have said everything I want to. I gave this to her the night before I gave birth.....I thought I would share it with you all. Mom – On the night before I become a mother (hopefully!), I want to share my gratitude with you. You have been so much more than a fantastic role-model, you have been my rock and my best friend. If I can be even half the mother to baby C that you have been to me, I will be a huge success. I find it hard to adequately express my feelings about our relationship – I truly believe it is unlike anyone else’s. You have been my biggest supporter through every dumb and smart thing I have done! The guidance you have provided through thick and thin is something I will take with me through every relationship or challenge for the rest of my life. I can never repay you for it. For 38 years, I have known that I could turn to you for anything and you would be non-judgmental, loving and truly my best friend who has always had my best interest at heart. But more than that, you have taught me what it means to be compassionate, empathetic and most importantly a spiritual being. Your faith is a testament to every one who knows you, but for me, it has been something to emulate and something to strive for. It is the greatest gift you could have ever given me. I am so proud of you and honored that you are my mom. The last five months have taught me more about our relationship than I ever thought possible. The conversations we have had are so precious, and awe-inspiring, that they bring tears to me eyes every time I recount them. As shi##y as some of this time has been, I will cherish it forever. The peace that you have given me in unfathomable and the grace you have shown is totally God-inspired. I know that no matter what happens and whenever it happens that you will always be an angel who sits on my shoulder. I can honestly say I have no doubt of that and find such utter comfort from it. So, mom I will be thinking about you tomorrow and can hardly wait for you to hold a beautiful baby girl in your arms. You are my idol and my inspiration. Love, Holly