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Medical Forum / Diseases and Disorders / Prostate Cancer / September 2004Past year with PCa
Two years ago I thought my life was finally getting back on track. My 17 year old son who had runaway on numerous occassions and dropped out of high school had finally gone back to school and received his high school diploma and was thinking about college. My husband and I were finally mending our relationship after just about splitting due to the stress of dealing with our teenager and conflicting ideas on how to "raise a teenager". We had just completed the process of building our "dream home" and finally felt good about life again. Things seemed great until my seemingly healthy husband was diagnosed with prostate cancer. I niavely was optimistic about my husbands diagnosis because as we all have heard from others "prostate cancer is sooooooo slow growing that you will die from something else." And after monitoring my husbands psa since 1996 surely we caught it early - nothing to worry about, right? His psa had just gone over 4. Boy was I in for a rude awakening!! I quickly learned that his gleason score of 7 (4+3) was not good but still prayed for the best. Unfortunately, we learned post surgery that the cancer had spread to the right seminal vesicle and bladder neck. I cried for a month. Our hopes for a "cure" were wiped out overnight. We've continued to be aggressive by doing radiation and ongoing hormonal therapy in hopes that my husband will see his now 8 year daughter graduate from high school in 10 years. I've watched my handsome and very distinguished husband age almost overnight. My husband who always has been optimistic now hardly smiles. He spends his free time in bed napping due to his lack of energy which can be attributed to the hormones. He has gained so much weight that he can hardely fit into his clothes anymore. He apologizes to me almost every day that he is sorry he cannot "please" me anymore. Its almost as if our life came to a screeching halt one year again post diagnosis. Its truly been a journey with lots of ups and downs. Some days I'm so full of anger I feel I could scream!!!! Other days I feel like this cancer thing has truly brought my husband and I closer and I'm almost grateful for the experience if you can imagine that!! We've tried to totally distract ourselves by doing home improvement projects. My husband bought a motorcycle and now a sports car. Men and their toys, oh well if it makes him happy. I think finally after one year of trying to digest the diagnosis of "prostate cancer" and all of its ramifications, I'm finally able to accept it and try to move on. It does take time. As I sit here at my computer and ponder our life journey, I realize I'm about to venture into a new life altering experience. Instead of going out to dinner to celebrate our 22nd wedding anniversary as originally planned, tomorrow morning my family and I will heed the mandatory evacuation orders placed upon us due to the eye of Hurricane Frances looming directly towards us. We are told that this storm has a radius of 300 miles and it is massive. It makes me wonder if we will have a house to come back to. I walk from room to room taking in all of our labor - the walls we painted together, the furniture we picked out together, etc. I pray that it doesn't wipe out the kennedy space center so my husband has a job to come back to. It's such a scary thought to realize that it all can be taken away overnight. I'm not sure what message I'm trying to get across or even if I have a message. I just needed to express my feelings about our journey this past year and where its taken me. I've had alot of growing pains but I have gained so much this past year. I am so much more empathetic to other peoples problems and I feel a need to reach out and help as much as possible. I've quit saying "some day" and I've tried to live in the moment. I realize just how lucky I am to have my husband by my side and I hope he will be there for along time. He has dealt with all this with such grace. Wish all of us Floridians good luck this week-end as we conquer this storm!! Sandi I'm not sure what message I'm trying to get across or even if I have a message. I've had alot of growing pains but I have gained so much this past year. I am so much more empathetic to other peoples problems and I feel a need to reach out and help as much as possible. I've quit saying "some day" and I've tried to live in the moment. I realize just how lucky I am to have my husband by my side and I hope he will be there for along time. Sandi =============== hi sandi - i think you said it very, very well. i could have written part of this when i was 21 and dodging bullets. it takes a holocaustic event to get one to stop and think about life and what's really important. i will share this with you. it doesn't stop at age 21. i re-evaluated my life when another tragic event brought grabbed me and shook me hard in 2001, when i thought my wife was just having one of her gall bladder attacks and then to find out that it was the big fatal one. and to be so lucky that she made it, just as your husband has made it through so far. and then, 3 days after open heart surgery, they punched through her artery wall doing an angioplasty and gave her a second heart attack. i was told that they didn't know if she would make it through the night. so, here, my love of my life, has been almost taken from me, then given back, only to be taken from me again. but she made it through that night and we've had our share of operations to keep her going since then. since feb. this year, she has ran out of blood three times and had to be refilled. i'm now told today, that they have done ALL tests that can be done locally have been done. this is from a leading expert in the field. there is nothing else left nearby and he is now giving us time to decide if we want to go to mayo or vanderbuilt and he will make the arrangements. we do not know what the future holds. my wife keeps saying she is sorry for not "being there", "for letting me down", "being in the way" and "for being a burden on me" since she too, has a fatal disease, i know the times i will see her sleeping in the bed are numbered and all you can do is count your blessings and live for the moment and seize every chance you get to make life enjoyment to share those moments, because today's moments or tomorrow's memories. i hope i'm not rambling and i certainly don't want anyone to think that i'm comparing or complaining. i am not. i am merely sharing a piece of my personal life. i do appreciate what time i have left with my wife as you do with your husband. true, it is maddening to know what is coming down the road and know it is going to happen and feel so helpless, but i don't see it as all negative. i can only speak from my side....this situation has been the inspiration to caused me to live life a lot more, to have more fun now, instead of "waiting till later" because we all know that sometimes later never comes.......so i'm happy now. and when you see your spouse's face light up from being happy, it has a great meaning now whereas before, you took it for granted. i hope that as you read this, you will know that someone out there cares and truly understands what you are going through. as i watch the weather channel and see the power of the hurricane frances, i can "feel" what it will do because i have rode through two hurricanes at sea - one of which was a class 5. when it rips steel pipes off that are welded to the deck as well as other heavy duty equipment welded down, you learn real quick that these are nothing to mess around with. i do wish you the best and hope that you can take all the precautions to get out of the way of frances. things can be replaced, people can't i want to give you best wishes and hope everything will turn out for the best and what you hope for. ~ curtis knowledge is power - growing old is mandatory - growing wise is optional "Many more men die with prostate cancer than of it. Growing old is invariably fatal. Prostate cancer is only sometimes so." > i hope i'm not rambling and i certainly don't want anyone to think that > i'm comparing or complaining. i am not. i am merely sharing a piece of > my personal life. Curtis, I followed many of your posts over the past year many of which have been focused on your wife and her ongoing medical conditions. You also have had to endure a great deal. Your wife is truly very very lucky to have you by your side - your love for her is quite evident. > i hope that as you read this, you will know that someone out there cares > and truly understands what you are going through. Yes it does, thank you. Sandi > Two years ago I thought my life was finally getting back on track. My > 17 year old son who had runaway on numerous occassions and dropped out [quoted text clipped - 62 lines] > > Sandi Sandi, I cried when I read your story. I can totally relate to the changes. My dear husband, Curt, is also on hormone therapy. His cancer was already mets to his bone and lymph system by the time it was diagnosed. He has also gained weight, sleeps when he isn't working or golfing, usually in the recliner (I think he likes to hear us while he sleeps). Our marriage was waay rocky over finances and stepchildren etc. We now treasure every single minute of every single day. It took a few months for me to accept that this was going to be the way our life was going to go. I pulled away from him as if he was already dead. I came to accept that he will most likely die before our 4 year old gets to high school. I now just hope he makes it until Trenton starts Kindegarten. I sit here with an unfinished house, wondering if I should try to get it done now or *later*. Will it kill him faster if he keeps working as hard as he does, He has gone on some trips this year, golf, now going elk hunting in Oct. we are going to go on a cruise before spring. He is trying to get me in the best financial shape he can.. I read your post 4 times. You are a very strong woman. and you love him very much, that resonates through your post. Take care and I will pray that you and your home survive for a long time. Lori  SignatureLori Devoted wife of Curtis, Stage 4 Prostate cancer at age 40 PSA 865 Dec 30,2003 44 Feb 23,2004 17.3 Mar 15,2004 18.9 Apr 16, 2004 17.3 may 15,2004 14.59 =))) July 10, 2004 mets to bone and lymph Lupron Q3months Casodex 50 mg daily Zometa qmonth http://community.webshots.com/user/lorismiller-date It took a few months for me to accept > that this was going to be the way our life was going to go. I pulled away > from him as if he was already dead. Lori, I've followed your posts closely since you've come onboard with your husbands advanced disease at such a young age. I have found your rapid acceptance and proactive approach to all this absolutely amazing. As you know, our husbands need our support more than ever now and at times its hard when you feel like your falling apart inside. We both are definitely in the same boat. If I'm not mistaken you are younger than me (I'm 43). We are way too young to have our husbands taken away prematurely and our sexual identities stripped from us. I also found myself pulling away from my husband during some of my darkest periods. I think we just have to be patient with ourselves and realize that it is normal to have these feelings and try to move forward. It is a journey with lots of ups and downs. Lori, if you ever need a shoulder to cry on, I'm here. Sandi Sandi, I wasn't sure from your posting what your husband's current condition is, whether he's on hormone therapy because the radiation failed, or whether it's part of the "salvage" treatment he was given in hopes of curing the cancer after the surgery failed to get all the cancer. One thing you might explore with your doctor is called "intermittent" hormone therapy. Some doctors argue that it is a good idea to apply hormone therapy for some period of time, then stop it. Only after the PSA rises to some level do they start it again. Some doctors are of the opinion that this not only provides a better "quality of life" (a chance to return to normal between treatments) but may actually extend life longer than continuous hormone treatment. Some doctors also think that alternating different hormone treatments, e.g., casodex for some period of time, then rest from therapy, then lupron or zoladex, also provides some quality of life and possible life extension benefits. One guy once posted to this group that he was on hormones for a year, got off, and his PSA never went up in the next 10 years. No one knows why he was so lucky. Maybe his treatment plus HT actually wiped out all the cancer. Unfortunately, he was certainly an exception. Best of luck to you through all of this and I hope you come through the hurricane with family and property fully intact. Alan > Sandi, > [quoted text clipped - 17 lines] > lupron or zoladex, also provides some quality of life > and possible life extension benefits. I asked Curt's doctor about this approach and he didn't seem very confident in it. but then, Curt hasn't gotten a lowest psa yet. 14.6 is still wayyyy to high. especially when men are having prostates removed with psas well below his. Maybe I can sneak an extra minute in with the doctor in Oct. and get him to talk about this approach. SignatureLori Devoted wife of Curtis, Stage 4 Prostate cancer at age 40 PSA 865 Dec 30,2003 44 Feb 23,2004 17.3 Mar 15,2004 18.9 Apr 16, 2004 17.3 may 15,2004 14.59 =))) July 10, 2004 mets to bone and lymph Lupron Q3months Casodex 50 mg daily Zometa qmonth http://community.webshots.com/user/lorismiller-date > > ... > > One thing you might explore with your doctor is called [quoted text clipped - 5 lines] > below his. Maybe I can sneak an extra minute in with the doctor in Oct. and > get him to talk about this approach. Lori, In the few reports I've read about intermittent HT, the patients achieved undetectable or near undectable PSA under HT before going into the rest phase. I don't know if it applies when the patient is already past the point where very low PSA is attainable. It may be that if Curt goes off HT his PSA will shoot up quickly. Your doctor is probably afraid that Curt is past the point where intermittent therapy can be useful. It may be that intermittent therapy is also inappropriate for Sandi's husband, but I thought it would be worth mentioning in case he would qualify. Alan > > > ... > > > One thing you might explore with your doctor is called [quoted text clipped - 25 lines] > > Alan We hope that Curt can try it. again, he won't change doctors. every time he says he will, he says "let's give him one more chance" and then 3 more months go by. I do enjoy reading your posts Alan, you are definitely a good resource for us here. Lori > Sandi, > [quoted text clipped - 6 lines] > One thing you might explore with your doctor is called > "intermittent" hormone therapy. Alan, My husbands hormonal therapy is part of the "salvage" treatment. The medical oncologist initially proposed 2 years of hormones. Presently my husband is in his 9th month of hormonal therapy with many unpleasant side effects. Lately I have researched "intermittent" hormone therapy extensively to see if that would be an acceptable alternative to give his body a rest. Although I realize that it is too premature to come to any definitive answer, some preliminary data is suggesting that not only is intermittent hormone therapy a potential option, it may actually be better in the long run. I recently read a discussion by Dr. Myers who has PCa himself and he cited a recent randomized trial comparing IHT with continuous and it showed a huge advantage to ITH not to mention a much higher quality of life. His philosophy is to start hormone therapy early on when the cancer volume is low and cycles of IHT for 3-6 months which have shown a reduction in the risk of hormone resistance compared with continuous. I think after completing 10-12 months of hormone therapy, we will probably approach the idea of IHT with our physician. We have discussed it with him before and he said that he would work with us any way possible. Although like many physicians, he is concerned about the lack of long-term data, he does realize the need to weigh quality of life with treatment options. If any one else is out there doing IHT, I'd love to hear from you. Thank you for your concern and insight. You've obvious done lots of research as well. Sandi Sandi |
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