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    Old 07-29-2006, 03:00 PM   #16
    CancerDad
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    Re: Husband 37yrs, just diagnosed, many questions?

    Hi Tonya:
    Your husband will most likely be recommended for chemo/radiation prior to the resection, which will shrink the tumor and allow for the surgeon to resect while still having enough bowel/rectum to reconnect. So, at approx. 5cm up he will require a resection with at least a 1cm margin...meaning they will cut out from about 4cm up to about 11 cm up. MAKE CERTAIN he is seeing a board certified COLORECTAL SURGEON, not just a surgeon who does some bowel work. He needs a specialist in colorectal surgery, like most of us have had. A specialist will in all liklihood be able to reconnect. Most text books will tell you that he will require a bag... if you have an experienced colorectal surgeon, then he most likely will not need a bag.

    However, I would advise your husband NOT to get caught up on saving his rectum and NOT having a bag. The number one priority is to remove all the cancer. Also, I was the same as your husband... I understood that my surgeon would remove all the cancer, but I was REALLY worried about having a bag. It turns out that my surgeon WAS able to save my rectum (tumor at 3cm. up) but he did it through a not so common procedure called a coloanal pull through. Many experts believe that this contributed to my inability to urinate, and my erectile dysfunction that does not respond to ANY medication.

    So, I KNOW how his head is spinning right now and his number one priority is to of course remove the cancer, but also to NOT have a permanent bag. I wish I could speak with him live, because I felt EXACTLY the same way. What I didn't think about, because of the shock and my focus on "NO BAG" was what could happen as a result of saving the rectum; what I would sacrifice in the long run. As it turns out, because of the chemo/radiation I received ahead of time made it difficult for my body to heal, I developed suture pus pockets-- an infection where they sutured the colon back to the LITTLE piece of rectum that remained. This caused significant scarring, which caused the tissue to close up or stricture. I painfully dilated my rectum at home for 1 1/2 years with dilators, and went in for procedure after procedure to have them dilate the stricture. Still, I went through HELL as the opening was LESS THAN the size of your pinkie finger. As a result, I had a rectum, but couldn't use it or go from the house for fear of being away from the bathroom and all my "utensils" because I had to liquefy contents, etc. without going into graphic detail!! Not to mention the fact that I still couldn't pee or have relations with my wife. I ended up having a temp ileostomy on the right side of my navel temporarily in the beginning, and now have a perm colostomy on the left side of my abdomen.

    Part of the problem is it is more difficult for a male with rectal cancer, especially low down because men have a VERY narrow pelvis which prohibits a surgeon from getting down their with surgical staplers to transect the diseased tissue and reattach the colon to the rectum. A surgeon REALLY won't know how narrow his pelvis is until he gets in there. Also, there are MANY, MANY nerves which run around the rectum, especially the lower you go-- nerves which control bowel function, erectile functioning, ejaculation, and urination. Also, part of rectal cancer treatment includes radiation, which perm changes the tissue to be almost like leather inside, and affects the ability of veins and arteries to direct blood flow in the pelvis. I would encourage him to speak with the radiation oncologist to see if there is a way to cover his penis and scrotum/testicles without compromising how well the radiation works in killing the cancer. I was able to wear a lead cup to protect my testicles, but like I said, I never even thought of vascular problems, etc. from radiation... I was just thinking about protecting my fertility at 31 y/o. I also froze sperm should my wife and I want another child; we always wanted at least 3. Funny how life changes things. I would be happy to talk with you or your husband directly more later about this and about working while receiving chemo/radiation and the fatigue, etc. involved.

    My other advice for you is to see what pathology comes back as on the biopsy they must have taken... See what they say about the differentiation of the cells... poorly/moderately/well differentiated cells. This will tell you how aggressive the cancer is. MOST rectal cancers are slow growing (mod-well diff) which means that your heads are spinning right now, but you DO have time to find the right colorectal surgeon, have him freeze sperm (just in case), etc.

    As for the TRUS (trans-rectal u/s) he had... they are about 70% accurate. My Trus Results said that I was a T2/T3N0M0... pathology after surgery came back with 6/10 positive nodes with no mets to other organs, just to the lymph system which could have caused micromets (spread too small to be detected). Post surgery I was a T3N2M0... BTW N stands for nodes and M is metastasis or spread to other organs; Mx means it is UNKNOWN whether there is spread, which is not all that uncommon to have, especially if he has not had a PET scan yet. I would definitely push for a PET as it detects cancer in the rest of his body.

    Bottom line is 1)You probably have more time than you think to make decisions regarding treatment; 2)Your husband has time to freeze sperm, which I would highly recommend; 3)He should speak with the radiation oncologist regarding covering his penis and testicles to protect from the harm of radiation... if this is not possible, than you have to decide what is more important...for us, a no-brainer..the cancer had to go;4) Make sure he is using a board certified colorectal surgeon; 5) Get a PET scan; 6) A colostomy bag is NOT the worst thing. You should prepare to have one because the tumor is so low, but a good surgeon MAY be able to reconnect you depending on the internal size of your pelvis and whether he/she can get the necessary instruments in there to work; 7)Don't be afraid to ask whatever questions you have for the surgeon. Bring in a notepad with questions written down so you don't forget to address your concerns; and, 8) Take this day by day... sometimes you will feel angry or scared, some days sad or bitter, others depressed, etc. Every emotion is perfectly normal and you WILL go through them all. Although right now, and for a little while, you both probably feel numb... again, perfectly normal.

    I know that this is A LOT of information I threw on you both... on top of what you are being told by others and doctors, etc. My advice is to print it out, or read and then come back to it. Also, please don't hesitate to ask ANY question you want to me or anyone else here.

    I am sorry for the circumstances, but know that there are many options these days and much hope. Best of luck to you both.

    Regards,
    CancerDad

    PS They will probably suggest putting in a dual or single central line implant in his chest... I say go ahead, it makes it MUCH easier for chemo infusion and blood draws, and is a same day procedure. Again, my prayers and thoughts are with you both. My wife and I and others on this board have been there and KNOW what you are going through. Please don't be afraid to lean on us for support.
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    Last edited by CancerDad; 07-29-2006 at 03:14 PM.

     
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    Old 07-30-2006, 07:02 AM   #17
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    Re: Husband 37yrs, just diagnosed, many questions?

    Tonya, I've discovered over the years that having CDad by your side as you walk this road is the closest you will come to knowing how it feels to have your hand in the hand of an Guardian Angel.

     
    Old 07-30-2006, 07:12 AM   #18
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    Re: Husband 37yrs, just diagnosed, many questions?

    Oh Ruth6:11, that was so beautifully said!

     
    Old 07-30-2006, 08:56 AM   #19
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    Re: Husband 37yrs, just diagnosed, many questions?

    Tonya,

    I think CD covered it all! (Thank GOD for CD!!)

    I just want to echo his comments about getting a good colorectal surgeon - studies prove that a good surgeon increases your chances for success in ALL areas of this surgery. Also it is possible that your hubby may need a temporary bag...I would recommend it, especially if he is going to have post-op chemo. This allows your new rectum to heal before you begin pooping from it. This saves you from endless bathroom trouble while on chemo. The bag is a HUGE adjustment, but in the long run having the temporary bag and allowing himself to heal from the surgery will be worth it. I have just come home from my reversal surgery (removal of the bag and reconnecting to my new rectum)...so far so good. I am through with 7 months of post-op chemo and am doing very well. When I was diagnosed I said, "OK Cancer you get me for one year and then I am moving on with life." I have stuck to that! In fact my reversal surgery was on the one year anniversary of my diagnosis... Aside from trying to offer help and consolation to the newbies (and the Vets when I can!) --I am only going to think about cancer when I have my three month check ups...so just know that there is hope that after this year of Hell is over you CAN get back to the good stuff.

    Best of luck to you!
    Take care,
    Cats

     
    Old 07-30-2006, 11:04 AM   #20
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    Re: Husband 37yrs, just diagnosed, many questions?

    Quote:
    Originally Posted by Ruth6:11
    Tonya, I've discovered over the years that having CDad by your side as you walk this road is the closest you will come to knowing how it feels to have your hand in the hand of an Guardian Angel.
    Ruth:
    Thank you for the BEAUTIFUL compliment! I do believe I am blushing, and I don't think it's this terrible heat of Summer either!

    I would just like to add though, that you seem to have a way about you to know when you are needed and fly in just at the right time. So if I am angelic in any way, you seem to be in every way.

    God Bless You.
    Hugs,
    ~CD
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    Old 07-30-2006, 07:15 PM   #21
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    Re: Husband 37yrs, just diagnosed, many questions?

    Wow - great info from CD! Nothing beats going through the process to give the best advice! Down the road if your husband does require a colostomy I'm available to let him know how easy it will be to manage. I'm a very active woman - hike, bike, golf, scuba dive, swim, hot tub, cross country ski, etc. - who has found my colostomy does not slow me down at all. It can be frightening to hear that one might end up with "the bag" but believe me, the alternative is much worse. I truly hope you are one of the many lucky ones on this board and elsewhere who have found that life does exist after colon cancer.

     
    Old 08-01-2006, 06:32 AM   #22
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    Re: Husband 37yrs, just diagnosed, many questions?

    [Hi Fly girl,

    I am so sorry to hear of your hubby's recent diagnosis. My husband too was diagnosed with rectal cancer in Jan 06. He is older then yours tho he is 58. Never had a colonoscopy and had his first when they found the cancerous tumor. Went for all the blood work and scans too, by the way he never had a elevated cancer marker it was completly normal whic I find strange. The docs all wanted him to go for operation but unfornatlly felt there was a good chance of a pernamnet colonscopy bag. He was staged and was a T1 no no lympth nodes involvement from what they could see from all the rectal sonogram s etc... They reccomended a hospital in Rochester that does endocaviatary radiation,but all if you have the certain qualifications. He did this 3 times direct internal beem radiation to the tumor site, and I am glad to report it is gone!!! hARDLY NO SIDE EFFECTS ,NO PAIN ,NO DISCOMFORT MEANING LONG LASTING, NO BAG. iF YOU WOULD LIKE MORE INFO THEN FEEL FREE TO WRITE ME... wE LIVE RIGHT OUTSIDE OF NYC AND WENT TO THE BEST HOSPITALS AND THE BEST DOCTORS BEFORE WE MADE OUR CHOICE. IT IS SO FRIGHTENING AND OVERWHELMING.. GOOD LUCK HANG IN ,THIS TOO WILL GET BETTER ...ELLICE

     
    Old 08-01-2006, 06:50 AM   #23
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    To Cancer Dad

    [B]I MUST SAY THANK GOD FOR PEOPLE LIKE YOURSELF. ALTHOU WE BRIEFLY SPOKE ONCE I REMEMBER HOW CARING AND COMPASSIONATE YOU WERE TO US BACK IN JANUARY WHEN I POSTED I NEEDED HELP REGARDING MY HUSBAND'S DIAGNOSIS WITH RECTAL CANCER. YOU IMMEDIATLY E MAILED ME AND HELPED TO CALM OUR NERVES A BIT. THANK YOU AND GOD BLESS PEOPLE SUCH AS YOU!!! eLLICE:: angel:

     
    Old 08-01-2006, 10:46 AM   #24
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    Re: Husband 37yrs, just diagnosed, many questions?

    Hi all.

    I wanted to thank all of you for your posts. I have been reading, and re-reading over them. I guess I get ahead of myself sometimes and ask questions that have already been answered in previous posts. Looking back on them I have found that you all have given me so much advice that I have been able to re-read the past posts for confirmation on my thoughts or questions. CD you have offered so much advice and information and I tried to share it with my husband, but he said he would take a look at it later.
    Quite honestly what I'm struggling with now is how to handle my husband. First of all he is the most stubborn person I know, secondly I feel sometimes that he doesn't respect my feelings or opinions. Although, he will say he does. Many, many months ago he told me of his rectal bleeding, and me being the conservative, worrier that I am, IMMEDIATELY said go to the doc., that's not something to take lightly. He never complained of it again to me or said much until just this last time, when he said he had a problem. Now, it's really progressed. I primarily work for our medical benefits, and this is so upsetting to me that he didn't take this more seriously in the beginning.

    Now, this am., I asked him to read over some of these posts BEFORE we go to the oncologist to educate himself, and he said he would read them later. He said he wanted to go with an open mind. I got upset because I want to help him, and feel like he isn't dealing with this, so we got in an argument this am. He said I'm not helping him by honoring his wishes to go with an open mind. ( We butt heads sometimes ). But to me learning what to expect, and educating yourself seems to be the wise way to handle things. He hasn't opened up any literature, or website, etc.. since his diagnosis. I feel like I can't get info info., and my heart wants to help him get through this, but he said I'm not making this any easier on him when I get upset. This is going to have such an impact on both of us, I don't think he realizes how much strain this puts on me. My thoughts are, get educated, get strong, do whatever it takes to beat this thing, and move on with life. I feel like I'm ready with my boxing gloves on, and he's standing outside the ring.

    Sorry, I know I'm venting. I've stopped working to help him, and I feel like I do everything around the house, and with the kids. He has no energy and just rests all the time, and is on the toilet. It tears my heart out to see him like this, and it feels even more defeating to see him not really dealing with this. He still smokes and drinks beer. He doesn't eat much, I feel like I'm watching him waste away. I guess that's what's making me angry as well.

    Everyday, it seems I go through a different emotion. One day I'm sad, the next I'm happy that we still have him, then today I'm angry. I hope I'm not coo-coo. I read back on the posts, and one of you told me that I would go through alot of different emotions. Maybe I should relax more like my husband and try not to get to emotional about this stuff. But, that's hard because it's really not my style.

    Sorry for the rambling. Thanks for listening. We go for our first oncologist appt. today. I think I will ask the doc., his opinion of the smoking and drinking at this point. Maybe now if the damage is already done, he may tell me that it's okay for him if it keeps him calm. Then I will feel really bad.

    Trying to keep my chin up!
    tonya

     
    Old 08-01-2006, 12:00 PM   #25
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    Tonya I understand all tooo well

    Hi Tonya!

    Your story sounds pretty similar to mine. My husband however much older but also very stubborn. Mike age 59 hates going to Doctors and at age 50 never had a colonoscopy as suggested. He then started bleeding about a year ago and said it was probaly hemmroids, and still would not go to Doctor. He actually bled about 8 months and I fought with him and he also was a heavy smoker and overweight and out of shape.
    Very stubborn, finally when the blood was now also in the toilet he got scared and went to Doc only to find out Rectal Cancer.. At first he wanted to know nothing about it and it was all on me to make the calls appointments you name it I did it. The Doctors would actually say to me I really want to speak to your husband, not you. He was very resistant and angry at first and we argued, as I seem to be more of what you describe yourself as. I said don't just give in fight you have to find out as much as you can to help yourself,his reply I am not you that is you and what you would do.
    At some point he has to take responsibility to help himself and find out all he needs to do to heal.. It is hard for us probaly harder to sit back and not be able to help. I finally told my husband after many many months like 7. I cannot do this anymore if you do not care enough then I will step back and leave you in control to take care of what needs to be done. I will support you but no longer do it for you.. This shocked him so he know goes on the computer looks things up, exercises , stop smoking , trying to lose weight, but it is always an up hill battle. Basically we are all so scared, and for a man to admit that he is scared is hard, Part of them also feels like they let us down,and they are not whole anymore. I can only speak from my personal experience, it will only make you stronger going thru this terrible diagnosis. But as hard as it is a postive attitude is always better then a negative one.

    I told my husband if he is going to live every day depressed like a death sentence then he has been defeated and dies a little everyday, what good is that?? Live one day at a time and pray for the best... You and your family will be in our prayers. God Bless you !! Ellice When he is ready he will get more involved ,it is alot to digest at once....

     
    Old 08-01-2006, 12:03 PM   #26
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    Re: Husband 37yrs, just diagnosed, many questions?

    Oh, wow, tonya, you are having a difficult time! I am glad you have come to the board to vent though. You must do that any time you feel like it.

    Everyone is different as to how they approach, accept, research their illness nd we have to respect those differences. When my husband was dx in July 2003, I became his advocate. He was too ill to take it all in at first anyway and he is also one who would just follow the instructions of his doctors, knowing that they must be right! I was the one who asked the questions! Doctors obviously preferred him, as I was harder to deal with! He was very good though in complying with whatever it took to get better, pushed and cajoled by me, his desperate and loving wife. I used to panic often and I learnt to try and hide that as it made him more anxious. He would never read these posts. Sometimes I would tell him about something I read on the board but he never showed the slightest interest in reading others' experiences. Now, I also have been dx with lymphoma, I will be my own advocate, not because he is not supportive, he is wonderful, but he is just not into reading up about these things. Maybe it would make him more anxious...and we know that can happen, don't we? Sometimes, too much knowledge is not so good! With both of us, as the caregiver and now the patient, I will continue the role of researcher, practical problem solver and so on!

    The role of a caregiver is really hard. The sense of responsibility is overwhelming. As a patient now, I know that the feelings when getting a dx as a patient or as a caregiver are not that different. In fact I would say it was easier getting my own dx than it was getting his. It really hurt my heart to see him in pain, in fear and uncertainty. I was in a similar fog that I am in now where life changes suddenly and you are in another world. This happened three years ago and it has happened again now. But I prefer dealing with my own dx than I did his. I am still worried that the treatment I will get might make it harder for me to look after him!

    Allow your husband his own reactions, feelings and so on but also allow yourself your own. There is no right or wrong way to act or react. Do get some support outside if you feel it would help. Identify good friends who can understand. The best people are on this board....and you know why? Because we have been there and we know. We know the pain, the fear, the responsibility. When you are feeling angry, try to get it out in positive ways. Put on some music and dance wildly, go into a room by yourself and scream if you have to, have a good cry. Do whatever it takes in a positive way to release all those frustrations. Get enough sleep, with medication, if necessary (of course under the supervision of a doctor) eat a balanced diet. This whole experience can be very exhausting and you need your strength for him and you.

    My thoughts and prayers are with you.

    Love,

     
    Old 08-01-2006, 02:58 PM   #27
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    Re: Husband 37yrs, just diagnosed, many questions?

    Hi Tonya,

    I know things are really trying right now. You are both scared and on edge. Believe me, it will gradually get better.

    People deal with cancer in so many different ways. Some don't want to know anything and some try to find every bit of information available. My husband is one of the ones that doesn't really want to know too much. He said it just confuses him. So I am the one who reads and asks questions and I am the advocate for him when he has appointments or hospital stays. It wasn't anything planned, we just fell into this habit. He has developed a wonderful attitude and wants to fight this with everything possible. But it wasn't always that way because when he came out of surgery and found out that it had gone to his liver he said no chemo for him. He was just going to let nature take over. That was almost as hard as finding out about the cancer. We would discuss it in spurts, when he wanted to talk, and within 3 days he was asking to see an oncologist.

    He gets really grouchy at times. I have to bite my tongue to stay quite and calm but he needs to vent too. Afterwards I will either go out side or in the shower and do my crying or whatever. You would be surprised how many weeds you can pull out of a flower bed when you are trying to "get it all out" of your system.

    Right now just let him know that you are there for him. Be sure to take good care of yourself, like the others said. If you are rested you can handle things a lot better. Just know that you are not alone in any of this. You can vent, scream or whatever you need to do and we will understand. I will keep you in my thoughts and prayers.

     
    Old 08-01-2006, 06:01 PM   #28
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    Re: Husband 37yrs, just diagnosed, many questions?

    Hi Again:
    I just wanted to post a message, reiterating what some have said in previous messages adding more about what my wife and I REALLY feel is important. I'm sorry if it's overload.

    When I was first diagnosed, my head was literally spinning and I was numb for weeks. I didn't realize the full impact of what this diagnosis meant. The only thing I did was think about my wife and kids should I not make it. Like you said, the first thought that went through your mind was "how much is the life insurance policy, is it paid up, basically will I be okay?" These are all thoughts I had for my family about my policies. You always kick yourself for not doing what you "had always intended to do." In this instance, I thought, "oh, [email protected]#t, I didn't raise my policy yet." Then I thought "oh, well-- there is NOTHING I can do to increase the policy now, and that will be fine for them.. they will be alright." Then I REALLY DIDN'T THINK about it again for a while. It was like I had to retreat into my own world, where it just wasn't real to me. I think this was my mind's defense mechanism in order to get through the indignity of ALL the tests and treatment. (I have had SO MANY rectal exams, had to show my genitals to everyone getting radiation 5 days a week. I got used to dropping my drawers and having women and men techs put this 'ball protector cup'-- they called it-- on me often times pinching my scrotum. I couldn't do it myself because every time I would try, once I lied down and positioned myself to coordinate with the three tattoos they put on me to make sure I was lined up to receive the three charges of radiation in the "right spot" every time, the protector would fall off. In any event, I think I became numb to get through this--if it wasn't real, then it wasn't happening TO ME.

    If you want some insight, I'd say your husband is doing the same thing...he's emotionally removing himself from the situation and remaining numb to it in order to get through it. He's probably thinking about you and the kids when he lets his mind open to it, BUT, it's SO overwhelming that he can't really think about much else right now. As time goes by, he will start to accept it a little more.

    IF YOU WANT TO DO SOMETHING TO HELP HIM:
    What YOU can do to reassure him is to do some research for him and have the list of questions for the doctors... you do the research and ask the questions (turn to us if you need to) until he is ready to open up and accept more of this as reality. At night when it's just the two of you, you can tell him how much you love him and are here for him throughout this-- tell him that you are scared too, but that you married each other and are in this TOGETHER, to take care of one another... show him some affection by rubbing his head/hair gently, or lightly rub his back. As a man, he is most likely feeling that HE is the one who is supposed to be the one who is strong-- don't take it personally if he seems distant; he is probably letting his mind accept a little about what is happening. Maybe ask him what he's thinking about, tell him that you took vows to be there through rough periods, just as you do the good periods. Ask him to let you be there for him, reassure him that you WANT to be there for him, to fight this with him. Tell him that you know how scary this is-- that you are scared too, but that the two of you can get through ANYTHING if you rely on each other. Tell him he has to let you in though, and accept your help.

    This is going to be a VERY TRYING time for you both... there are Boards like this; feel free to VENT, Rant, be angry, throw a fit, ask questions (all normal)--- there are SO many people to help you... rely on help that people offer to cook meals while he is going through chemo, or if friends that you know well and your kids like being with (so you won't worry and don't feel guilty)-- if the offer to pick up the kids, or drive them to school, or offer play dates, take them up on their offer, even for a couple hours... take a nap with you husband when he's tired... believe me, you will be too and will need the time with AND without your husband. Take an hour and go do something you like doing-- go read magazines at the book store and get a cup of coffee, go to a friend's house who won't just harp on your husband... a lot of people don't understand, but you will need some time of your OWN too... so take something you enjoy doing and get away from it all for a little while and do it.

    It is VERY important for your marriage and the two of you to spend time together-- some of the time helping him, some of the time just being together, some of the time being there for him emotionally-- again stroking his head/hair or lightly rubbing his back (touch is VERY important), some of the time NOT talking about cancer or treatment (even though this WILL BE the center of your lives for at last a year). But DON'T forget about YOUR NEEDS TOO... this is why I say take some special time for yourself. Do what you enjoy and what you can afford (most people put aside enough for a few months of living, but usually not a year-- hopefully he has Short Term Disability payments and Long Term Disability if he needs it (if you don't know, you may want to ask him-- money can be a major stressor, even when you are going through so much, it just compounds things when you have to deal with this worry too).

    OKAY I AM NOW DEFINITELY BABBLING. I JUST FEEL for you two so much, having been there done that myself, and I wanted to try to point out some of the pitfalls, and some ways to help him and you to get through this. Everybody is different though, and you may find other things are more important than others. I was trying to give you some advice and insight as to WHAT YOUR HUSBAND IS PROBABLY THINKING RIGHT NOW.

    I truly wish you both the best in this difficult time in your lives. You WILL get through this by working together.

    Fondly,
    CancerDad .
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    Last edited by CancerDad; 08-01-2006 at 09:48 PM.

     
    Old 08-01-2006, 11:53 PM   #29
    flygirl3
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    Re: Husband 37yrs, just diagnosed, many questions?

    Hi there!

    It's been another long day, just got the kids down and had a moment to check the board. You truly are all blessings to me right now. I'm know some of our family/friends might think I'm a bit nuts, when I tell them I have really been enlightened and encouraged and supported from this board--some of them just think it's sorta weird. I look forward to coming to this board in my quiet times and it has REALLY helped me. Just knowing that there are people who care and truly understand what I'm going thru has been such a fresh breath of air at the end of the day. So many people throughout the day that I encounter are at a loss of words, or feel uncomfortable and the conversation sometimes feels awkward or forced, and today for whatever reason I began to feel like I/our family was a charity case! So thank you, thank you, thank you and many hugs! XOXOXO

    I sometimes wonder what everyone looks like on this board, as to put a face to the name. In my mind as I write I picture CD as this handsome greek god with all these beautiful little goddesses/angels that flutter near bye. Sorry-getting a bit corny. Humor is always good for the spirit!

    Funny today I was thinking that cancer does not discriminate, it effects all ages, all different social classes, races, etc. I found myself at the oncologist appt. today filling out the paperwork for my husband, he was late. I felt like the staff was looking at me weird or something-it was an odd feeling. After all was said and done, the doctor and the pa told me that they couldn't believe my husband/we were the patients-that we were SO young. The doctor when she walked in was speechless, and almost brought to tears. She said the referring doc (gastronolgist) never mentioned how young my husband was, and she was sincerely moved and at that moment, it made sense to me why I felt so strange in the waiting area. She told me that the staff kept saying that we couldn't possibly be the patient that was supposed to be there. You see, this is so crazy to me because we are the cutest young family. Our kids are beautiful, and my husband and I are in great shape, and we look like the all-American family, my husband could of been a model, he is absolutely beautiful. He's not overweight, he "did" work out alot and had a great physique, we just don't look the type or age to be battling this. It truly has people in shock in our community.

    Anyways, we liked the oncologist and will begin treatment at the end of this week or monday. She wants to be very aggressive with the treatment because of his age. Like many of you had suggested, they will start with a combo-chemo/radiation for 6 weeks, break, surgery, break, more chemo. She said that at this time it shows most effective for a cure/survival rate.
    We talk to a surgeon tomorrow about getting the port a cath? put in for the chemo which will be continuous for 5 days a week, in which he will wear a pack/pouch. It will be a combo of 5FU and something else, oxypl_____n? I can't find the paperwork at the time for the correct spelling. In conjunction with the radiation that she said will be the most painful part of all of this, especially beacause of the location.

    The doc., was so surprised at how informed I already was. She complimented me on my knowledge and encouraged me to continue. My husband made a comment on how I worry too much and she said that it was good, one of us should. She said I should of been a nurse and was happy to see me so involved in this and she made the comment to us that she knew who to call if she needed to know how my husband was really feeling, as she knew that I kept a close eye on everything. She said this would be important especially during chemo incase my husband wasn't aware of his side effects getting worse, she could count on me paying attenetion to these symptoms. She also told my husband to stop drinking as it would counteract what gets processed through the liver, and advised him to slowly stop smoking as it was only making matters worse.

    The oncologist was very positive and I felt better as I left, however I'm sure they are positive with all patients. She told me that staying positive is 1/2 the battle--she has seen patients who were doing well and on the road to recovery, almost cancer free, but give up and they don't make it. Cancer Dad you are so right about Attitude is Everything! She confirmed this to me today. I am happy to say that tonight after the appt., I went to dinner with a friend and came home to my husband reading up on chemo. I think after today the reality of it began to set in, and our roles in this are starting to take place. Thanks CD for reminding me of the physical need of touch and how important that is.

    Thanks again for allowing me to come to this board and vent, and more importantly, thanks for reading and caring. Truly, no one really can offer words of encouragement that really hits home unless they have walked in your shoes or experienced this sort of pain. Thank you from the bottom of my heart!
    XOXOX Tonya

     
    Old 08-02-2006, 05:14 AM   #30
    Nassau one
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    Re: Husband 37yrs, just diagnosed, many questions?

    Hi Tonya, I am so glad the appointment so well and I can hear the relief you are feeling. It certainly is so important to have a sensitive and caring oncologist. The relationship between onc and patient and caregiver should be very special. It is so good that you went out to dinner with a friend....that kind of activity gives you a sense of normalcy in a otherwise surreal life.

    I am feeling very, very nervous about my first appointment with my oncologist today even though I have been through this with my husband, and I am hoping for some of the relief you are now experiencing.

    Your husband is so lucky to have such a loving and supportive wife to accompany him through his journey to wellness and I am sure he knows it. Keep us posted and come back any time you want to vent. It is interesting that you mention wanting to put a face to names on this board which we are not allowed to do. On another board I am on, people have webpages, with photos and even get together twice a year! However, it is amazing how we do get to know each other in spite of the anonymity. I think we should write a book!

    Love,

     
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