Just updating everyone, but first let me say how wonderful you have all been with the support you have given me and my husband while we went through this journey of finding out about his cancer. To come to this board and feel the energy and good wishes and support through this screen has been a rewarding and wonderful experience.
Now the news! It seems that my hubby has something kind of rare for his age. This usually happens to 20somethings. He also has some unusual tissue in his tumor that could not and should not be there. So the samples were sent to two different med universities. One known world wide here in St. Louis and one in Indiana where the top testicular cancer doc is, he treated Lance Armstrong and 7 tour de france's after cancer, this doc must know something. We also understand my husband has been all the talk at the hospital we have been using because this is so unusual.
So not to go into all the technical details the general consenses of all the docs, and believe me there were as many opinions as there were docs, is that my husband should continue to be observed. That means there is no evidence that it has spread, and by going to the oncologist for exams and bloodwork and getting an x-ray once a month and getting a ct-scan once every three months, if it does spread they will detect it soon enough that the cure rate will still be around 90%. If they do detect it has spread, they can do chemotherapy then. That was a biggy, no chemo. The chemo can be so difficult sometimes causing permanent health problems. Of course some docs still thought he should have the chemo just to be sure, but what is in my husbands favor is actually his age. This is a young mans cancer and a young man would not stay on top of all the visits and tests, so for a young man they would do the chemo as a preventative to be sure. Being older and more settled and having the time and responsibility to keep all appointments and tests, the docs feel it is just as well to observe and wait and see. Then if things show up surgery and chemo can be done at that time.
We have been truely blessed. This has been a fast paced journey and a roller coaster ride of emotions. We have had wonderful support from family and friends and have been blessed with doctors that are forthcoming and are not alarmists and who are not to arrogant to reach out to other docs that can offer expert opinions as well.
Blue, Hangin, Golden, TK and everyone, thanks for all your words of wisdom. You have helped me to keep a handle on my fibro through all this. Yes I did forget to breath a few times, but you guys were always there to remind me. This past week with the tension mounting until yesterdays appt. Trying to find all the info I could everytime the doc would call with lab results etc. My fibro has reared an ugly head but I am keeping it at bay letting it have its space. Today is my day of rest, time to let the anxiety go, take those deep breaths and to say a few hundred prayers of thanks. Thanks for all of you and for all those I have around me.
tears of joy well up and spill over. now you can fall flat on your face for a few days. and you can giggle often. you and your hubby will find youselves smiling big happy sloppy smiles at each other. i am so very glad chemo is not being pushed at you both. it is a huge step that cannot be taken lightly. there are lifetime changes within after chemo. it is a trade off. if the time comes you will have had more time to seek out choices and science will have had more time to find your answers.
know what? i am going outside right now and do a cartwheel for both of you. one of my special ones. joy, joy, joy. kiss the doctor on both cheeks for me next time you go in.
this news has made my day!
Golden I know you have gone through the waiting and the what if's and you know of what I speak when I talk about the anxiety of the unknown.
Blue I know somewhere in your past you have some knowledge of that chemo word. It should not be the first choice when there are options that are less severe. God has blessed us so for and we will continue to pray for his blessings in hope that the cancer will not show up anywhere else.
A cartwheel, now I feel so special!!!
My fibro is gifting me with all kinds of things as it fights to keep control, sharp shooting pains, widespread itching, fatigue and such a dull ache everywhere. This too shall pass, I will give it rest and respect and wait for a new day tomorrow.
you are most welcome. gifting love and laughter during difficult times is the purest form of selflessness i know. you are surrounded by us. you do it for us and we for you. it is the perfect balance.
20 years ago i almost had both my breasts removed and faced the prospect of accepted treatments for what they called a precancerous condition. for two weeks i ran about in the deepest fear. finally a wise doctor told me i had choices. i still have my breasts, never did any chemo, and the precancerous condition never turned into cancer. i get my mamo done every year. so far so good. tho there are times when i sweat under them that i think of life without these big girls hanging down in front of me, giggle.
my experience with chemo comes from helping others thru the process. it is not a job, it is my purpose. after what i went thru i decided no person should go where i went without a friend to hold their hand. i create my herbal remedies, give them away to cancer patients, and help with the process of choice, life, death, and the cleaning of the emotional house so that the person can leave their body without remorse or fear. i have witnessed birth and death. both are amazingly powerful moments. being with a person at their last moment is an honor.
fear is not your friend at any point in your life. fear is always the enemy of rational thought.
there you go kiddo. now you know the whole story.
peace and healing, love and laughter, good friends and strong shoulders,
I had chemotherapy regularly for quite a while to treat my nerve and muscle wasting illness. I would finish the treatment, rest for about 5 days and get ready for the next lot. It made me personally so dreadfully ill, but the usual sickness and exhaustion and all of the horrid bits I though were worth taking the chance on at the time. I was actually in a whirl not knowing what was happening to my body. Needless to say the chemo didn't work for me.
Having said that, as I always advocate, the choice should always be one made by the patient, given all of the relevant information. I unfortunately wasn't given much time to take it in, as they were classing my condition the same as the one that took my beautiful brother's life, and time was of the essence. It was when they got my doses wrong and overmedicated me on it, that I literally pulled the plug on them and the treatment.
It wasn't determined that it had done any good anyway in my case, but the reason I am telling you this Glojer is because the choices are there. I am so very pleased that your darling man doesn't have to have it though, and that he will be checked so very often for anything going wrong. Marvellous I think.
Take care my friends
I am not a medical doctor, I only speak from my own experience of the illnesses I discuss here.
Last edited by goldenwings; 07-27-2005 at 08:08 AM.
Thank you both for sharing your stories. Blue I had a friend several years ago go through the same thing. The night before her mastectomy surgery(you spent the night in the hospital then) she and her husband decided there had to be a better way, cancelled the surgery and explored other options. They have since moved but for many years she was healthy and free from the cancer, she choose radiation.
Golden, I am sorry you had to go through such an ordeal and that it didn't work. I can see the urgency though with the problem seeming to match your brothers. We are fortunate that although 50% of my hubbys tumor was a fast spreading cancer it has not spread yet. That gives us time, time to wait and see and to weigh all the factors. The tumor itself was smooth with no jagged edges which helped the surgeon to remove it all and feel confident about that, there are differing opinions from the pathologists if and how much blood vessel invasion there was. The list of positives are plenty and we feel we have time on our side, which most cancer patients do not. Even if the very next ct-scan shows it has spread to the abdominal lymphnodes, the next step could possibly be surgery to remove them and still wait to do chemo. We won't know that until and if it happens.
That is why we feel so blessed, as Blue and Golden know from experience either personal or from helping others chemo can do more harm than good sometimes and my hubby and I agree it is a last resort kind of thing for him. That is not to say it may not have to happen in the next 6mo. but any time we have to make him healthier and to investigate more is a blessing.
I have given my fibro a good rest and will continue to respect it today and have a loose and lazy day again. We are meeting friends for dinner, so I will rest until then. My house is a mess, but as my old auntie use to say the dirt and mess will still be waiting for you when you are ready to clean. How right she is, I am so much more loose these days with my housecleaning.
Say Blue will you get to keep your houskeeper when you move or will you have to find another one? My hubby and I have decided life is too short, we are going to get someone in to clean. That will be another project finding someone. I'm sure it will help the fibro though. By the way one whole month for my hubby without cigs, I'm am very proud!!
hooray hubby! well done!
shaloma will come once a month at the new house. it will be an hour commute for her each way. too much to ask of anyone. and i don't want anyone else. i will have to do the yuckie barf toilet and such in between. i am going to take on the project of teaching my brother how to do housework. this will be fun!!! yea, right!!
time to fall on my face for a bit before i have to go do my thing.
thank you for your orange energy. i sat in the sun a bit ago and filled my cup. you are the sun. warm and radiant.
I am so proud of your husband. It has been just over 2 1/2 years for me since I last had a cigarette - with one small lapse at the beginning. It is hard to do but he will get there. I can tell because of his determination so far.
I am not a medical doctor, I only speak from my own experience of the illnesses I discuss here.
Hooray for you golden 2 1/2 years. I will look forward to saying that about my hubby. He is beginning to say things taste funny, I know he is getting his taste buds back from not smoking. Occassionaly he will say do you smell that and I know he is beginning to smell things again. Life just becomes a little clearer without the cigs. Although please don't misunderstand I don't condemn anyone who smokes, that is a personal choice. I'm just glad he decided to give them up and because of what happened with his health he thought about the years it could add to the great time we have with our grandson. I really think that is what did it, and although our grandson doesn't realize what he is saying (he is only 2 1/2), our son taught him to say "no smoking grandpa, proud of you" and that tears at his heartstrings.
Blue, you must really have an aversion to cleaning the toilet. Of course you did live with two men, that sure explains it. When I was growing up, somehow cleaning the bathroom and subsequently the toilet became my job so I guess I was indoctrinated early. What a great thing shaloma will come to the new home.
Rest this evening my friends ( it is going on late afternoon here) and we will see what energy tomorrow can bring.
My heart lept when I read the news about your hubby. I was lying in bed last night and had been thinking that I need to find out about your hubby since I haven't been posting much.
I am glad we were all here for you and by the way girl, anytime.
Sorry your fibro has flared up however under the circumstances I would be surprised if it hadn't. I know this sounds negative but one learns what sets it off and for me it is stress. Be good to yourself, be kind and thoughtful towards yourself.
Hurts to type, I guess I have that costochondritis, I have never felt anything like it. Oh well, another gift from fibro.
Again, congrats on the good news about your hubby and I am so very glad that all will be well.
Peace and love, Janet
"Compassion can help heal our world"