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Fear is getting the best of me

Posts: 11
Joined: Feb 2004

Hello All,

I'm mostly a lurker on this board; however, I have posted a few times regarding my husband Jonathan. He was diagnosed with rectal cancer in January. According to PET scans, prior to surgery, a large tumor was found in his rectum, lymph nodes, and a 9 mm liver lesion. He went through chemo prior to surgery (5 treatments) which consisted of Oxiplatin, 5Fu and Lecovorin. He also had one treatment of Avastin. According to his CT scans after the treatments it appeared as if it had eradicated much of the disease, however, as many of you informed me, we wouldn't know until the pathology reports came back how successful the treatment really was. Prior to surgery, one of the surgeons commented that this was the best response to chemotherapy that he had seen in all his years of practice (30 years). The surgeon also stated that his liver was impeccable; no disease present. We were informed by the doctor that out of 41 lymph nodes removed he had 9 lymph nodes with very microscopic disease. The doctor indicated that the cancer was so microscopic that they had a hard time detecting it. Jonathan is know taking radiation and more chemo (Xeloda) and will end his treatments in 2 weeks. He will have a one month reprieve. He is then expected to go on six more months of treatment. His CEA when he was diagnosed was 130 and is now 1.8. I'm writing to tell our story and to also say that I'm frightened beyond belief. Jonathan is my whole world... he is 37 and I'm 34. We don't have children...we tried prior to his diagnosis but were unsuccessful. It has been a difficult year with the unsuccessful pregnancies and now this. I can't imagine my life without Jonathan. Can someone who has nine lymph nodes affected who had a small lesion on his liver that was eradicated with chemo (won't the liver lesion come back since it wasn't removed surgically?) Can he still have a long life? Is it possible that the cancer can be eradicated for good? I feel so foolish asking this question, no one really knows the answer to this. Only GOD knows the answer. I realize that no one is assured of tomorrow. I feel so lost. I'm shaking as I write this. I don't know where to turn. I thank god for all of you and I pray every night that a cure will one day be found.

Anonymous user (not verified)

HI. Reading your post was like reading my own post. My husband Bert, although older than your husband (52) was diagnosed last year with stage III, four nodes, right colon cancer. I remember when the surgeon came out and reported his findings how if my son hadn't steadied me I would have gone through the floor. My mom, who is a two year non-operable lung cancer survivor, and yes, I consider her a survivor since her odds were about 12 months when she was diagnosed, became the rock that I leaned on through those terrible, terrible days when all I could think of was that my life will end if I loose this man. We have been married 29 years and are still going strong so how could this all have happened. He had been getting regular exams, etc., etc., etc.

As it has now turned out, after complete right colon resection and four months of 5fu/leuc and then 6 more months (finishing up next month) of 5fu/leuc/oxaliplatin, all current scans show now evidence of disease! But like you, I worry and worry because, you see, Bert's CEA is rising steadily...from 0.9 in November to 9.0 (how ironic...reversed) in late April.

You are not alone in your fears, your worry, or your concern. While I cannot comment on some of your questions as my husband's extent of colon cancer is different then yours, I can tell you not to give up hope and faith. You are so right...no one hear can tell how long any of us have but if we throw in the towel to early, we'd never know exactly what kind of a chance God gave us which we threw away. I posted today about how worried and concerned I am so I won't go on and on about not spending time worrying about things you cannot change...today is not a good day for me to tell you that. But for the most part, I do practice this and I find peace and comfort in just taking each day as it comes and living in the moment, not dwelling on the future. Come to this board often and post your feelings...it's one of the few places where you can totally let your hair hang down and that too feels better. Be supportive of your loving husband and stand by his side with a smile on your face letting him know that you have the outmost confidence that he will beat this disease and will spend many, many more years with you.

Big Hugs cause you sound like you could use them,

nanuk's picture
Posts: 1362
Joined: Dec 2003

Kelli: don't forget that FEAR stands for FORGETTING
THAT EVERYTHING IS ALL RIGHT..Jonathan's story sounds like a success story to date; stay positive
and continue your obviously excellent caretaking;attitude can mean a lot. Each day is a
gift, enjoy them one at a time. There are success
stories on this site, and it sounds like yours is
one of them... Bud

Posts: 120
Joined: Apr 2004

My hubby was diagnosed last october. He had a large mass removed from his colon. At the time he had two small lessions on his liver (1.0&8.mm). We did not know at the time if the lessions were cancer. They did not do a biopsy during his colon surgery because one was deep in the liver.
He had a Pet Scan which confirmed that the lessions were most likely cancer. We went for a second opinion at a larger cancer center. They suggested treating the lessions, and not do a biopsy. He had 8 treatments and responded well to chemo. Oxi/5ur/lecorvorin. After his 6th treatment one lession was not visible at all. The other lession could barely be seen on the scans.
He had his right lobe removed the beggining of this month. The pathology report came back that one lession the cancer cells were completly dead. The other did have some live cells, but minimum.
Our surgeon told us that this is the most aggressive form of cure. Since your hubby had only one lesion can he have the area of the liver removed?
I was real happy when I heard that all the cancer cells were dead in one lesion. This gives people hope that can not remove the lesion.
Also my hubby was not treated with Avastin, but will in follow-up therapy.
I understand your fear, but remember that they are coming out with drugs that are doing wonders. Next lets hope for a cure.
Hope this helps. If you have any questions your at the right place.

Posts: 835
Joined: Apr 2004

What a rough year! My wife and I (also both in our 30's)are going throgh simialr although my rectal cancer doesn't seem to have spred to the liver and I am still awaiting my surgery we can certainly identify with your fear. It is so normal when you are threatened by disease like cancer that fear is one of ways we respond. It is healthy to have it but vital to not let it fester in you, You are doing the right thing talking to others and I am sure you are also talking ot your husband about it. He will have simialr fears and although they are incredibly difficult to talk about as acknowledging a fear that someone will die is scary it is cathartic to do so. My wife and I were lucky enough to have baby this year (born the day after I finished chemoradiation) and feel blessed by him but his presence at time increases our fear I won't be around to see him grow up. We talk about this though and although it always ends in tears we feel better for it after. Fears that lie unacknowledged realy do eat away at you. Also keep an eye on the thoughts that are undoubtably going around and around your brain. The tendency at times like this is to allow logic to disappear and allowillogical and negative thought s to dominate. Keepin g check on how your thoughts go and balancing those negative thoughts with logical postive ones often helps prevent them from running away on you.

Feel free to email if you want to chat some more. This cancer lark is hard but it is a game of odds where no one can predict yor husbands future but he does lie within a group of peopel with stage 4 cancer some of whom go on to live long lives and all you can do is play the odds to try and ensure he is one of them. His good response so far is positive.
Best of luck

littlejulie's picture
Posts: 311
Joined: Mar 2004

hi kelli,
i know how you feel. i can't say anything more than steved. he speaks the truth. those lingering fears in my mind tend to dominate so my logical and postive thoughts are very few.

kangatoo's picture
Posts: 2115
Joined: Feb 2004

Hiya Kelli--hey--keep posting and let us know all.
Jonathan has fought well and your love for him is certainly one of the biggest advantages he has to keep fighting.
Jen and I are 49/48--30 years married this year.Without her love and devotion I would have been a total wreck.We talked, cried, talked and cried again --many, many times.I was not as far advanced as Jonathan but it hit us hard nonetheless.The last 10 months has been hell and we both acknowledge each others periods of frustration/anger/fear.We work together to try and ease the pain, and even now that I have been in rem. for 3 months we know that cancer has become a part of our lives--we live each day as it comes and spend every minute together.Our love is as strong as yours.
Yes--no-one can give us an answer to our future--I live in fear every day of my life--but I don't let that fear run my life---I have to believe that if mets. are found in future tests--medical advances can help me--treatments in the past 10 years have advanced so much.Have faith Kelli.
Your friends here understand!
As a "qualified angel" carer in kangas eyes I am sending you a "rainbow"
luv from kanga n Jen

Posts: 708
Joined: May 2004

reading your note brought tears to my eyes. I was diagnosed with rectal cancer 11/02 - at age 32. NO RISK FACTORS, just bad luck. My husband and I never had kids and after radiation treatment, I am in menopause. No need for you to feel sorry for me - just to understand I feel your pain.

I was diagnosed at Stage 3 with 3 lymph nodes. I was treated and had remission for 5 months - then got a solitary lung met. This was removed and now I am NED (no evidence of disease) and on chemo, again.

The fact that your husband is so young and responded so well to the chemo is amazing!!!!!! THis means his tumor was more aggressive (common in young people) and therefore, is more reactive to chemotherapy.

I know you are frightened, and that is OK. But don't forget to try to enjoy every triumph and smile. So far, Jonathan's story sounds like best case scenerio for what he had. Life after rectal cancer can be sooo normal. I pray you get there.

Just take it one step at a time. I think my husband has a harder time with my disease than I do. I feel like I am battling it head on, and Pete (my hubbie) feels like he just sits there and watches. What Pete doesn't always realize is that I would be lost without him. Just knowing he is there watching and supporting me gives me soooo much strength.

Try to find what makes you and Jonathan happy - and do more of that. There are no absolute answers here, but plenty of hope. Try to find yourself a support group. Another thing I noticed about Pete, is that he refuses to talk to me about his stress because he doesn't want to bring me down.... Make sure you have a way to vent. (especially as a woman - you need a good vent!) We are here for you.

I am scared too. I just try to continue living my life and enjoying all I can. Take short trips, go to dinner, see friends, tell Jonathan how much he means to you. Appreciate all the little things in life. To me, that is the reason horrible things, like cancer and war, are here - to remind us to appreciate the happy moments... no matter how long or short.

Also, in addition, I am a primary care doctor. Talk to your MD about starting an antidepressant. A therapist friend of mine told me no family should go through chemotherapy without antidepressants on board. Think about it. Not that I like to push drugs, I just think it may help you if you want to try.

Moral of the story. Every feeling you have is NORMAL reaction to the battle against cancer. Everyone's story is unique. We are here for each other, and you. Jonathan is on the road to recovery. IT IS ABSOLUTELY POSSIBLE THE CANCER IS ERADICATED, but only time will tell. Stay tough and just hang in there. Being such a caring person will help Jonathan more that you know. Don't worry about life without him, just enjoy life with him!

Posts: 37
Joined: Apr 2004

Hi ther, I wanted to write to you because I too have a husband who was dx with Stage 3 (6 out of 19 lymph nodes involved. I am scared to death. He has rectal cancer. Our lives have been turned upside down. He had a colon resection in Nov and has had 6 months of chemo. His scans just a month ago were clear. Even though, I find myself worrying about our future. I don't tell him, because I don't want him to dwell on this. I try to be positive, but in private usually fall apart. We have known each other since we were 16 years old, now we are 42. I can't imagine life without him...I wanted to email you because your feelings are exactly mine. I know that we need to find the courage to deal with everything, but it is very hard. Even if this cancer never comes back, our lives will never be the same. I pray that his cancer will not come back, and that in the future we can help other cancer patients. If his cancer does come back, or if something happens to him, I don't think I could even help anyone, because I would be too emotional. And of course they need support. Please feel free to email me and talk anytime. I think we have alot in common. Take care, Elaine

kangatoo's picture
Posts: 2115
Joined: Feb 2004

Hey Elaine--Jen is just like you!!You know I have so much respect for you guys I don't know who is worrying the most--patients or carers.Jen keeps telling me---it'll be ok--it WILL BE OK!
She is just so strong I really can't believe how she does it--her inner self just has to be worried--but she just keeps it all in the background and really helps me to get on with "today"!
I agree--life will never be the same but after 30 years of marriage(this coming august) our love for each other just gets stronger.
Fear is still on my mind--I just find it incredible that the "carers" here are able to cope, including Jen---AIN'T LOVE A WONDERFULL THING!!!!!!
No matter how hard it gets Elaine----yu guys are just amazing.
Inspirational is a better word!
Join the kanga "angel club" Elaine--yu qualify 110%
Our very best--kanga n Jen

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