Looking For Small Cell Bladder Survivors

Dear Candi,

Please keep in touch and know that I am here to offer any help or support.

A few of the immune boosting things my father did was to drink Essaic Tea, he took Transfer Factors and Green Magma, we did juicing. He took lots of other stuff too. That's the tip of the iceburg. One thing that can't hurt would be to seek out a naturopath with experience in treating people with cancer. I love their spin on the disease. They get to the root of what caused the cancer in the first place. They believe that something went awry in the immune system to cause it.

Be prepared for a rollercoaster of a journey my friend. It's not an easy road for anyone but especially not when one's health is
compromised. Take good care of yourself in all of this Candi.

Lyn

Dear Lyn,

I wanted to appoligize for taking so long to get back to you. I think about you nearly every day and sometimes wish I could just pick-up the phone and ask what you think I should do about something or what you think we should try next. I just believe you are incredibly knowledgeable in this area for having been through it yourself with your Dad, and having paid such close attention to everything you learned along the way. I am also convinced that you are an Angel here on Earth, I don't know how else to explain not only the incredible strength you've had, the ways in which you've continued to help others, but also in how you managed to accomplish so much with your Dad, in such a short amount of time. You simply must have been sent here from above. I'd like to think that you took care of your Dad and now he watches over you. In the very least, I know that you are going to be so blessed in this life for all you've selflessly given of yourself to others.

I'm sure you know all too well that overwhelming stress and pain that comes along with watching a loved one being ripped apart, from the inside out, by such a heartless disease. Out of curiosity, do you have your own family, your own children? And how on Earth, did you get BOTH of your parents to cooperate with your desires to find your Dad the BEST possible treatments or solutions you possibly could? And how did you avoid all those unnecessary dramas that often accompany that much stress in life? I only ask because of the number of unforseen obsticles my siblings and I have been faced with and we've only just begun in all of this. Please allow me to break it down a little for you,
1) There is a Doctor who is supposedly incharge of my Dad's treatement and yet he has never before treated anyone with this particular Cancer. This same Doctor keeps using words such a "Could" and "Might" and "Hope" and "Miracle" as methods of treatment. The reality is he's grasping at straws because he doesn't have a clue. Believe me, I believe in Miracles and I feel strongly that no one has the right to rob us of Hope but I don't understand why this Doctor would not at least suggest that my Dad see someone more knowledgable and I'm told he has not. Isn't it his resposibility to do what's BEST for my Dad, even if that might mean sending him to see someone else? My StepMom told us that this Doctor told them that he had "heard" of a patient with bladder cancer in Seattle (a little North of them) who survived for 5 years. Why would he even say that? I'm almost positive from all of the information I've compiled and all of he specialists that I've spoken with, that "Small Cell Bladder Cancer" is NOT the Norm or the rule but rather the exception, and that no one who's been diagnosed with it thus far, has actually survived that long (though I truly believe if someone were to actually put into use ALL of the information that you've compiled through your own experiences, and all of the other information that others have to add, these patients just might have a greater chance of survival).
2) There's the Oncologist who has also admitted to never having tried to treat someone with this particular Cancer before, so everything with him is nothing more than Trial and Error.
3) There's my Dad, himself. He is being stubborn because he feels so bad/ill but I'm also not sure that he realizes the seriousness of all this. He certainly doesn't have a Doctor who's telling him as much. He's simply said to most of us, "I'll let you know when I'm feeling better and maybe you could come for a visit then."
4) There is my StepMom who's asked for our help in different areas of research but has done NOTHING with it (including research for herself in as far as FMLA). She's also suddenly become incredibly possessive of my Dad and completely hushed about the majority of the information in regard to his treatment and/or progress, if any. She's also begun to lie to us as a means of control, as if we would never know the difference. She's told us that Dad's Doctor had told them no one can permitted anywhere near Dad for 30 days after his Chemo treatment and since there were not 30 day lapses in his regimens, no one would be permitted anywhere near him. I should've asked about herself but I decided not to argue with her about it right now. In speaking with some cancer specialists, I was told that in worse case, Dad only needs to wear a mask and to wash his hands constantly but they had never heard of anything so severe. They also explained the importance of respecting Dad's space and his health, so as not to overwhelm him or exhaust him because his strength was vitally importance. However, they also told me that it had been proven beneficial to cancer patients to be surounded by family and close friends and also that it would prove greatly beneficial to the health and sanity of my StepMom, as well, if we were there to help and that neither of them would probably recognize it until it happened. I know that my StepMom could use the help with getting Dad to his appointments, helping Dad with mobility issues, helping take care of Dad period, cleaning house, running errands, etc. but I don't think they'll admit it. I even had my CA. my sister call and tell my StepMom that we were going to get a hotel near by and that way, if they needed anything or Dad was up to having visitors, we would be there. My StepMom's answer was that we were not at all welcome until they said so and that NO ONE was going to get through their door unless they agreed. Often times, we're not sure if what we're being told is coming from Dad or from my StepMom's version of what she thinks is best. Basically, we've never been able to get to my Dad without going through my StepMom.
5) There's all of the different life circumstances that happen to us even when we aren't dealing with someone we love being terminal. Example; there are 4 of us (3 girls and 1 boy). All 3 of us girls have children, two of us girls are married, and my brother and my unmarried sister both have really good jobs that they can't afford to lose right now. I think I told you before that Dad lives in Tacoma, Washington and that the rest of us all live elsewhere but I'm not sure if I told you that my brother lives in Monterey, California and my married sister lives in Orange County, California (not too far from that place in Longbeach that you told us about), I live in Santa Fe, New Mexico and my unmarried sister lives in Dallas, Texas (close enough to the specialized hospital in Houston). We would all help in anyway we possibly could because of course my Dad is our biggest concern right now but our efforts are being hindered. My sister in Dallas offered to remodel the downstairs of her home to include an apartment so that my Dad and StepMom could be closer to better treatment and I offered to pay for the plane tickets but my Dad said, maybe this summer (I honestly hope he has THIS summer). My brother bought a plane ticket to go sit on the couch and watch the superbowl with my Dad (since their team made it) and he was told too bad and wasn't permitted to come, even though his ticket was non-refundable. Then there are all the issues with our children and school and husbands who are working. My sister in CA. is moving to Missoui (as I told you before) but probably not until May. One of her daughters is in year 'round school right now (she gets out in May) but she had a break from school for the month of February. Her other daughter is only two. Since I am disabled and my boys are all between the ages of 15 and 24, I was going to go up there with that sister for the month of February so that we could take turns helping out my Dad and StepMom, as well as her daughters (in the hotel room) and then by sharing a room and expenses, we'd be able to stay for nearly an entire month. Then my sister in Dallas was going to go up in March during spring break and leave her 9 year old with some of my Dads friends during the days so that she could help them during that time period. My brother was just going to play it by ear. Well I'm sure you can already see all of hopes and plans were squashed but to top it off, suddenly my StepMOm has begun to create all of these unnecessary dramas. I know everyone handles their own stress differently, so I'm trying to wait it out and ignore it but she's chosen to single me out for whatever reason. She said told my siblings to tell me that she and Dad were mad at me and because of this, I would not be invited at all. When asked why they were mad, it was nothing substantail and only excuses. It was because I had not always gotten holiday or thank you cards there on time (though I also ofen DID), I didn't make my boys send individual cards themselves, suddenly they're upset with me over a lifetime fued I've had with my Mother, and because I never appoligized for a misunderstanding my sisterin Texas and I had way back in May (never mind that my sister and I have moved beyond it). I offered to make everything I possibly could, right, but I was told it was too late but they're not only hurting me but my children as well and my sisters and I really feel like it's just my StepMom. Right now, I am beyond devastation. This is not at all good for my already failing health and I never knew emotional pain could be this deeply painful and I've been through a lot in life. I am scared to death that no one will get to see my Dad before it's too late and I don't think any of us want our childrens last memories of my Dad to be at his funeral. I mean, I don't want MY LAST MEMORY to be there either.

I feel so alone right now and I'm trying hard to paint on a smile when it comes to my siblings and my own children, so no one else will need to suffer as much. I just tell them that everyone handles stress differently and when my StepMom becomes stressed out and can't handle it alone anymore, she'll call. But I've also told them that we would all probably feel the same way if it were our husband. My CA. sister keeps telling me that she can't believe how sweet and understanding I am, after all my StepMom has put me/us all through but that's only because my sister doesn't know the pain and anger I feel inside. I want so bad to just go up there and put my Dad on a plane headed straight for Houston and to tell my StepMom that if she's not going to do it, I will, and if she wants to join him she more than welcome, but I know it's not my call and it's just not going to happen.

I wish I could give you my e'mail address or my phone number but I saw where this web sight squashed your attempt to pass on personal info. to another previously. I just feel like you understand me and our situation so much better than most. Well thank you for listening anyway and once again, I'd welcome anything you think might be of some use to us in all of this.

Let me just end by telling you that all I really know about Dad is that he just started his second Chemo regimen and that his bleeding stopped after the first. However, he has lost a great deal of weight and he is incredibly weak. He has always been a very tall (6'4") man and too skinny, so I can just imagine what he looks like now. His bedroom is upstairs and he's no longer able to make it up there so he sleeps on the sofa. Prior to his first Chemo, the tumors had already spread to the base of his lungs. He has also become very irritable, which I know pain and illness tends to make us do, but according to a neighbor, he blew up at my StepMom (cussing and yelling) over her becoming TOO pampering but I swear to you, none of us have ever heard my Dad raise his voice in all our lives.

Please write soon. I'll be waiting to hear if you have some useful advise or even comforting would be nice right now. Again, Thank you so much for being there, for all you've had to offer, just for everything.

Always a Friend,
Candi

P.S. Please, if anyone out there has anything to offer, I am completely open to suggestion, especially from those who have had similar personal experiences as the one I've mentioned previously. I'm not really sure how many people actually see this but I thought I'd add this P.S. just incase.

Thank You So Much,
Candi

Dear Candi,

I'm so sorry you're going through so much turmoil beyond the horror of your father's illness. I'm sure you know that the fact that the cancer has spread to his lungs isn't good. I'm wondering what kind of chemo he's on.

I know that if one's white count levels get dangerously low, they can get neutropenia and people should wear masks around the patient. My father had that in his final few weeks. It actually got better but we were just really careful to make sure that no one had colds, etc. With everything I've gone through with my Dad and all the people I've been around in similiar situations, being around your loved ones is the best medicine in the world. It helps tremendously.

I've never been the type to meddle, it's not my nature but let me offer you this advice. I think you and your siblings, depite any problems amongst you, need to take a stand. I would think you should all plan a visit, maybe not at the same time. Your father may or may not realize how dangerous his disease is and the implications of the cancer spreading. The chemo won't cure it. It may make it better for a while Candi, but it won't cure it. And then, when it gets worse, the doctor may suggest more chemo and round and round it goes until he gets weaker and weaker. So either your father realizes how bad things are and can't deal with it or he doesn't really get it. Either way, it's a very serious situation and I wouldn't want any of you to have any regrets that maybe you didn't put your collective feet down. It's your right to see your Dad. Maybe someone needs to explain to your StepMom that you all want some closure with all of it.

Candi, I'm not saying anything horrible is going to happen tomorrow but time passes quickly and each month that he's around is a gift. I can't believe how isolated you all are. It's really unbelievable. I think an intervention is necessary. I'd like to wring the doctor's neck for not even suggesting a second opinion. One thing we've learned is you to ask about EVERYTHING. You can't take anything for granted Candi. A caregiver has to be so proactive. Asking questions is a must.

I just hope he's on a decent chemo. Try to find out what his regimen is. Maybe your StepMom needs a major heart to heart chat from you or one of your siblings. The whole thing about no visitors is a red flag in her approach to caring for your father. Obviously, you wouldn't want someone who is sick to be around him but he can't live in a bubble.

Even though it was just my mother and I caring for my Dad, we had so much support from our family and friends. He was closely affiliated with a beautiful restaurant in town. It was written up in USA Today as one of the ten best restaurants in the country with a view. He would spend so much time down there for the two years he was going through treatment. It was his second family. He felt so much love and positivity when he was down there. I know for a fact how much hope it gave him. Thankfully, we had a very cohesive team of people around us. As a matter of fact, when my Dad was hesitant about going to the Burzynski Clinic for treatment, I asked the manager of the restaurant to talk to him and help convince him to go. He assured us that money wouldn't be a problem. They would have fundraisers, etc. to help him through. Those gestures are things you never, ever forget.

I wish you had the same type of circumstance going through this with your Dad. I just don't want to see your father get so weak someday, that you all haven't had some treasured moments
to spend with him.

By the way Candi, I am a professional illusionist and I will be performing in Las Cruces, NM with the Las Cruces Symphony Orchestra on April 8. I'm not sure how far away your are, but I'd love to meet you! My website is www.magicoflyn.com. Check it out if you can.

I wish you the very, very best of luck dealing with everything. Please feel free to e-mail me anytime you'd like. I'm sorry this site won't allow phone numbers to be printed. I don't quite understand that. But I would really try and look up the info for the Las Cruces show and see if that would work for you.

You and your father are in my heart and in my thoughts. Please take good care Candi.

Love
Lyn

Dear Lyn,

Thank you for always being so kind to me and for reaching out in friendship and support to this stranger in need. Your kindness and generosity has touched me deeply and more than you know. In the midst of all this pain, I have been blessed with a very dear friend. I have so looked forward to each of your responses and I continue to be uplifted by your giving words. I appreciate you so very much and I wanted you to know how much you are appreciated for all you've already done to help me.

I was even further touched by the kindness of your invitation. I'd really like to go, there's truly nothing I'd like more at this moment but you will actually be about 5 hours away from us. I'm not sure if it's something that may be feasible or not right now but we are going to try to make it. I did however, have a couple more questions about it all. I don't want to seem presumptuous in the least, so please forgive me for being naive. I just wanted to check with you to find out if your performance was going to be a private affair or if it would be open to the public. Though my first priority would be in meeting with you, I just wanted to find out if we might also be able to attend your perfromance as well (if we were even able to get down there). School, Sports, Work, & my health are the things that might keep us from being able to go but I'll try to keep you informed. I did want to ask you though, if this is where you wanted me to e-mail you or if you wanted me to do that through your work e-mail? I just wasn't sure if your work e-mail went directly to you or not. Just let me know, either way is fine.

I showed my boys your web site (the two still at home are 15 & 17), they thought you were awesome. They loved your web pages. Frankly, I'd tend to agree with them. I never would have dreamed that was you but what a wonderful gift happiness and excitement you've been blessed with giving to so many others.

As far as my Dad goes, I'm still pretty much on the outside of the loop but I've been told that my Dad's bleeding has not only stopped but he is now better able to retain his urine, due to some shrinkage of the tumors. One of my Sisters has decided not to ask my Dad and Stepmom if she can go to visit anymore because she can't deal with the rejections. Although, another of my sister's (who is my Stepmom's favorite) is already planning a second visit (with her young son, I might add) and I'm not sure about my brother but I had heard he was going to go for a weekend. This is all such a painful experience for everyone involved and though you know that life won't always be easy, I think we also always never think it will happen to us or our loved ones.

Thank you again for everything and please write back when you have a minute or two. As always, I'll be looking forward to hearing from you.

Always A Friend,
Candi :)

Dear Candi,

Thanks so much for your kind e-mail. I came home late last night from a performance and didn't have a chance to respond. It's really frustrating in this war against cancer. Throughout my father's battle I knew how bad his situation was but since he was such a fighter and I'm not one to ever give up, I thought we needed to fight it head on and try different approaches. There's no dress rehearsal for any of it, emotionally or clinically. So often Candi, it was like - door #1, 2 or 3. Should we do this or should we do that. Should we go here or should we go there. I was so disheartened to learn that we didn't have alot of options. I should say good options with good track records. This wasn't good enough for my father or anyone else in his shoes. I had this insatiable desire to keep on searching for something all the while knowing deep down how critical things were. The reason I'm relaying all of this to you is that all I can do is share all of the info I have accumulated and hope it helps somehow. But the bottom line is - it should be better for anyone going through this. I was absolutely disheartened to learn about Dana Reeves death today. It's such a tragedy. With all the technology in the world, the internet, cell phones, sending out missions to Mars and Jupiter, fighting a senseless war in Iraq and wasting billions and billions of dollars on it and not to mention precious lives, and this is it? They should be able to do better. I swear sometimes I wonder if they want to find a cure. They don't act like it. Sorry to be rambling Candi, but there should be something better out there for your Dad and there should have been something better for my father.

Now that I've stepped off my soapbox - my shows in Las Cruces are open to the public. The one that is exclusively for the public is on the Friday night, April 7 at 8:00 pm I believe. The other shows are educational programs for school children that are bussed in. It's the same show but those are on Thursday a.m. I will have some free time on early Friday afternoon if you could possibly meet. I think I'm supposed to be in New Mexico next January but that's a long way off. You can e-mail me through my website. That would be the best way.
I would love to meet you Candi but if you can't make it I completely understand. Five hours isn't a walk in a park.

I hope you are doing okay. I think about you alot going through this. Your father's illness is enough to deal with but combined with all of the other challenges it's got to be really hard. We can only take one day at a time and sometimes one hour at a time when necessary. It's amazing how we all get through it somehow. I think back to what my mother and I have endured and I still can't believe that we've gotten through. You'll get through too Candi. Just keep on hanging in there and be strong.

I hope and pray your Dad's condition improves and I pray the day comes when he'll want you all around and involved in his care.

Take care Candi! Keep me posted on things.

My strength and friendship to you,
Lyn

Hi
I almost feel guilty for writing this because it seems like you are very busy and could maybe help someone at an earlier stage of cancer, but I was wondering if you (or anyone else) might have some thoughts for our family. My mother-in-law (age 72) was diagnosed in October 2005 with small cell bladder cancer, stage 4, with one area of metastasis to the liver. She had her bladder removed and has now had four chemotherapy sessions. She was pretty weak last week and had to have a blood transfusion, then a platelet transfusion. The doctor said she could only have two more sessions. My husband is trying to facilitate her doctor talking to the doctors at MD Anderson. I feel frustrated at times because it seems like my father-in-law takes everything the doctors say at face value, without asking questions, because he trusts them implicitly (old school, doctors-know-everything mentality, I guess) and frankly I was angry when the doctor called my mother-in-law to say her CT scan results were "90 percent improved" and left it at that, which she took as a very good sign, but then he told my husband and father-in-law she had six months to two years max. Why do doctors tell you things that, unless you specifically ask questions to the contrary, sound good, when they really are not? I mean, a 90 percent improvement in a cold is great and means you're gonna be fine in a day or so, but a 90 percent improvement in stage 4 cancer is not great -- Why do they only elaborate when you nail them to the wall? Is this common for doctors? Please don't get me wrong, I have worked in the medical field in a secretarial capacity for 19 years and have great respect for most medical professionals, but I wish they would just tell it like it is so that perhaps you don't waste precious time thinking things aren't as bad as they are, when really you should be pursuing different/additional treatment. I also have three children (16, 7 and 3) who love their grandmother very much, and I don't know if I should be trying to "prepare" them for something that is very imminent, or if she has several months/years with us, in which case I wouldn't make a point of it at this time. (The 16-year-old knows she has cancer and that it is not good. The 7-year-old knows she is sick, but has no idea how bad.) I know the doctor can't predict a particular date, but in some ways I feel he knows more than he is telling us. I guess I just needed to vent for a minute, but I also have a question that I hope doesn't come across as crass to anyone. Does anyone have any thoughts on whether at stage 4 of this very aggressive cancer it is worth going to a naturopath, trying to get my mother-in-law to Texas, etc. or (barring a miracle, which I totally believe is possible) if it would be harder on her than its potential help would be worth? My husband and I would do anything we could to help her, but I sure wouldn't want to, for instance, have her travel to Texas at her weakened state, only to find out it was too late to help, but actually that the exhaustion of the trip hurt her. I deeply appreciate anyone's time responding to this, and am very grateful to have found the website.

Dear Callene,

I wish I had some words of comfort for you and your family. From all of my research during my Dad's illness, I realized that his type of cancer was very, very difficult to treat and because it was small cell bladder cancer which is so rare, they hadn't done much research to offer him any other options besides chemo. He did try some alternative stuff. He went to a naturopath and went on a strict regimen of about 60 pills a day and essiac tea. I think it helped his immune system for a while but during this time he was also undergoing chemo. The idea was to keep him as strong as possible going through the chemo. Some people have had major success just doing the alternative regimen instead of chemo and radiation because chemotherapy just wipes out the immune system and makes you weaker and weaker. In my father's case we had two things against us. By the time we went to a naturopath, his cancer had already spread to his lungs. With small cell, that's a terrible sign because it means that it's elsewhere in the body. It may not show on a CT-Scan because the cells are so microscopic. The other thing is that small cell cancer is so aggresive and spreads quickly. His bladder was removed and we thought things were looking good but as a "just in case they didn't get it all" he had four cycles of the gold standard chemo. Four months later, it had come back in his lungs. Now, he's already had the gold standard chemo, which means any other chemo won't be as effective. Every time a different chemo is tried, it's effectiveness becomes less and less. Even though we knew it was all a crapshoot, we didn't want to face the inevitable. He went on two other chemo regimens. The first one gave him the most shrinkage but that only lasted four months or so. The next chemo gave him terrible neuropathy and didn't help the cancer at all. A few months later, it spread to the liver and after that my father had about six months left to live. During that time, we went to the Burzynksi Clinic in Texas. We thought about MD Anderson but I looked into it and they didn't have anything to offer besides having more chemo. There were no clinical trials. We gave the Burzynski Clinic a try hoping for a miracle. Unfortunately, during our month long visit, his cancer got worse. I won't bore you with all the details, but the bottom line was he was slipping away and of course, we still didn't want to face it. He went on radiation for a month and a helf because the tumors were so big in his lungs, he could hardly breathe. The radiation helped but there wasn't anything we could do for the liver. If it was a different type of cancer he might have been able to have radiofrequency ablation but with small cell it wouldn't have worked. His liver started to fail and he could hardly eat and got weaker and weaker. When my father's cancer spread to his lungs, I overheard him ask his doctor in Boston how much longer he had. I thought I'd collapse on the floor because he said six months to a year. My father never told my mother or I but of course I knew. He lasted eighteen months. When he was hospitalized near the end of his life, he asked how much longer. The doctor said a week and exactly a week later he died. If there is any hope, personally I don't believe a doctor should give a time frame because you never ever know. I read story after story and had spoken to people who had beaten the odds for years. But because of the nature of small cell bladder cancer, it's pretty bleak especially if it's spread beyond the bladder.

I don't mean to sound so grim but my father was such a fighter and had such a positive attitude. I truly believed because of his fighting spirit, he had a good chance of being around a much longer time. Because your mother-in-law has already been on chemo and because of the nature of her cancer, I don't think MD Anderson can help at this time. If I had to go through all of this with my father from day one, knowing what I know now, I would have gone to MD Anderson right away and had his bladder removed there. We talked to ONE cancer survivor with small cell bladder cancer and that's what he did. They gave him chemo BEFORE they removed his bladder to clean up anything looming before the bladder was removed. A few years later, he doing great. He's the only survivor they had in their database for us to talk to.

I hope this information helps you. I pray for you and your family's strength during this heartwrenching journey.

Take care,

Sincerely,
Lyn

Dear Lyn,
It's late (I've just gotten home from my in-laws and need to get kids in bed), but I wanted to tell you thank you from the bottom of my heart for your quick, thoughtful response. I would say you can't imagine how comforting it was to have that support, but having gone through what you have, I'm sure you CAN imagine. Thank you for taking the time to reach out to strangers like Candi and me. I only hope it's a positive thing for you as you help others, though, and doesn't serve to daily open wounds that are trying to heal from having lost your father, even though I doubt he is ever far from your thoughts.
Thank you again for giving from your heart and your time.
Very sincerely,
Callene

Hello I have read your messages and I am glad to know that someone knows about this disease. My dad who is my best friend has small cell primary in the bladder that has metastasized to the liver but the lungs, brain,bones are all clear. he did one round of carbo/vp16 and feels fine he went in to do his second round and his wbc was.7?? However he feels great. He is playing golf?? What is going on? I am doing everything I can to help him live can anyone help me with any information?
Thanks and prayers to all
Sandi