A Little Lost...

My mother began her journey with OC on November 4, 2008. Within three weeks she had been diagnosed Stage 3, undergone an extensive debulking, and was looking at starting chemotherapy right before Christmas. She came through chemo better than I ever anticipated. The only glitch in the whole process is when she needed to have some fluid removed from around her lung in the middle of treatment. Chemo ended right before Easter - and her markers were down to 7. Celebration time, right?
Well, all summer long she complained about gaining weight, being tired (she was walking 4 miles a day), and that she just knew that the cancer was back. They recently did another Cat Scan because she was complaining about a pain in her side, and it was discovered that she had fluid around her spleen. They withdrew it a couple of weeks ago, and they mentioned that they had withdrawn some old blood with the fluid. The fluid was "clear" of anything, but now they are noticing a possible "shadow" in that area, and my mother's tumor markers went to a 40. Two weeks later it was up to the mid-70's.
There is no rush by the doctors to see my mother. They booked her an appointment two weeks ago for this coming Tuesday with the same doctor who did her original surgery. Her oncologist said that the surgeon may or may not want to do surgery, but once he decides then they will know when they will start chemo again.
My mother is not a fighter. She tells me that all she needs is for me to tell her that I love her. She comes over to see me and my children every day, but she always looks so grim that it is beginning to make all of us dread her visits. I know that I am not in her shoes, and that she is scared (and so am I), but I am at a loss as to what I should be doing. I want her to have a better quality of life, however long that is. She refuses to join a support group because her primary care physician told her that it would only bring her down. (He also missed her cancer for over 6 months while she was going to him for stomach and abdominal issues.) What do I do? How can I make her embrace and make the most out of her life? Or do I just sit back and let her allow this disease to ravage her life?
I am the parent of three children, and now I feel like my mother's mother. I feel so lost...

By zircons
Posted August 29, 2009 at 4:23 pm
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Does she use the computer? Would she go to this site? Is she still seeing her primary care physician? What about a gyn/oncologist and a gyn/oncologist surgeon? I don't feel this group brings anyone down. It is a good place for support and information. Some women on this site have been on chemo for years. I was discovered to have ovca three years ago and had chemo and then was cancer free for three years. I am again undergoing chemo. A positive attitude helps, but I don't know how to convince anyone to have one. What about her talking to a psychologist or psychiatrist? Would she do that?

By jkl2i
Posted August 29, 2009 at 9:14 pm
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She uses a computer occasionally, and I honestly don't know if she would go to this site. I have talked with her repeatedly about joining a group or talking to her doctor about possibly going on an anti-depressant for a while. She is afraid to take more medication. Her surgeon is a gyn/oncologist, and I am going to bring up a support group and medication when I go with her to her appointment on Tuesday. I really think that Tuesday is going to be a really rough day.
Thank you so much for replying to my post. It does my heart good to hear that this is a safe and supportive site. I finally bit the bullet today and joined because I know that there is no way that I am going to be able to go through the next couple of months without a larger support net. My family, friends and co-workers are wonderful, but I worry that I am going to burden them too much. I hope that all goes well with you, and know that I am rooting for you to be cancer free again when this round of chemo is over.
Again, thank you so much for replying to my post.

By Shearaw
Posted August 29, 2009 at 9:58 pm
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I hope that your mother's spirits can lift soon. Those of us who have had a recurrence diagnosis, know the initial feelings of sadness. Ups and downs are natural and common. I hope that they will pass as she and her oncologist can come up with a treatment plan. There are still many chemo options for your mother.

Since the recurrent disease is often much less volume than the original disease, there is not quite the imperative to treat it immediately. In my own case, we took almost two months while having two consults about second surgery, before deciding to try carboplatin alone. When that did not work after several cycles, it took another several months to investigate the possibility of doing cryoablation. Over that period I did have a few CT scans and CA-125 tests to stay monitored. It was close to 8 months later before I started chemo on a clinical trial that has ultimately proven to be more effective. Our oncologists are trying hard to strike a balance between using the arrows in the chemo quiver, with using up the entire quiver.

Till next week's appointment it seems that the best thing you can do is reassure your mom of your love and commitment to walk down this road with her. Let us know how the appointment goes, as we are here for you also.

By lovemnms
Posted August 29, 2009 at 10:15 pm
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Welcome to our site!
If your mother doesn't use a computer gather some of our posts and print them for her. Maybe it will be a good conversation starter.

This site will benefit you and hopefully her too.

By Ovacom06
Posted August 30, 2009 at 7:51 am
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I agree with lovemnms print some post let her know that she is not alone in this fight. Sometimes the doctors just don't get it. Sending her healing thoughts and prayers. (((HUGS)))

By lifeisgrand
Posted August 30, 2009 at 10:30 pm
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You've joined a good site. It would be great if your mom joined too but if she doesn't, you will find the support you need. The ladies here are all wearing the same shoes and their insight and words of hope and comfort will really help you and also help you to help your mom. It's a tough road to go alone and while your friends can be supportive and helpful, sometimes a stranger who has experienced the same thing can be much more so. God bless... he will see you through!

By quacker
Posted August 30, 2009 at 11:12 pm
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Dr Bernie Siegel in one of his books states that support groups double survival. I belong to one that is not only supportive, it's free. It's also open to caretakers as well as survivors. Check out Gilda's clubs or Wellness Centers in or near your home town. I totally disagree with the PCP who says a support group will bring her down. It has given me tremendous hope, as does this web site.

By verlinda
Posted August 31, 2009 at 9:46 pm
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Once in a while someone will post on here who perceives our honesty and support as dragging each other down. I've found this site to be a life saver. Even survivors of most other types of cancer don't quite "get" what it's like to have a cancer so prone to recurrence. (I'm on the really fortunate ones whose cancer was caught at Stage 2, so I feel a little guilty for talking to people who've had more advanced stages and are such recurrence warriors!)

I think you definitely should bring up support groups with the surgeon. Maybe he can get your mom to try them. I don't know how old she is, but many older women think whatever a doctor tells them must be true. Women my age (55) probably are the first generation to think we'd better check it out ourselves. That might be a factor to consider with your mom.

By Coachdunn
Posted August 31, 2009 at 10:32 pm
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I'm sure your mom is scared, and worried.....But as
most of the others have written, she needs to know that
there are hundreds of women who share her concerns!
I don't think that ovca is "the death sentence" it once was......it's a chronic disease. I feel that you have to
learn to live with it. There are so many treatments..
You mentioned that your mom is not a fighter, have you asked her to "fight", because you want her to win?
I'm not big into "support" groups ...where you meet and sit around and talk about Cancer...etc BUT I have so appreciated this "on line" support group. It has validated so many of my concerns, and hearing from other women... about their journey. She may try this
"support" group. My prayers go out to you & MOM

By Mfourreal
Posted September 1, 2009 at 12:11 am
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Hello,

I really don't know what to say, but hang in there . Please put yourself in your mom's shoes. When she comes around try and be as up beat as possible no matter what. Just give her a hug and tell her you love her. Fight for her and just maybe she'll start fighting too. take her places she loves and enjoy each day for it is a blessing from GOD. I remeber wheni use to dread my mom calling on the phone all day at work telling me to turn on KPBS to 89,9 radio talk show . to listen to something inIightening cherish each momment . One day she wont be there and you will truly miss her moodness. So just love her and yourself ..... Blessing

By Lemona
Posted September 1, 2009 at 11:17 am
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You might want to do a search on this site for women near where you live. Perhaps you can find someone who could be your buddy or better yet your Mom's buddy. Your Mom might be inclined to talk with someone who is going through it and understands all of the emotions and fears. Just a thought. Best of luck to you both today and please let us know the outcome.

By jkl2i
Posted September 1, 2009 at 7:06 pm
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I just want to begin by thanking all of you. You have raised my spirits and made my journey a little bit easier these past couple of days. I have decided to tell my mom that I have joined a support group - hopefully she will see how beneficial it is for me!

She went to her gyn surgeon today, and he is just as perplexed as her oncologist. They have decided to do a small exploratory surgery on September 14th. This way he can look at what is inside because he is not seeing anything on the scans. He said that he would drain the fluid off and see what is going on inside her right now - I am guessing we will be waiting on results for a couple of days...GOSH - I hate waiting!! (I sound like my kindergarten students...) He did say that the fluid and rising tumor markers indicates that the cancer is active, but until he goes in we won't have a clear picture of what is going on.

I am taking it a day at a time, trying to be positive for my mom and my family, and reading through posts to boost my spirits.

Again, thank you all so much! Hopefully my mother will see the benefits of joining a group and join one herself! Keep your fingers crossed and I will keep you posted!

By abbaschild
Posted September 1, 2009 at 8:29 pm
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I'm not the type to join a "support group" that sits around and talks either! But I am so glad I found this site!! I wish I had found it sooner than I did! It's great to be able to just get on our site and just read....you don't have to comment if you don't want to....but we do share such great information like .....
*different chemo options & how we each reacted to it
*the surgeries we went thru & how we got thru it
*social security benefits
*which diagnostic tools we benefited from
*which cancer fighting foods we eat
And the list goes on.......

We're just a bunch of fun girls on here learning how to live life!!! Tell your mom we're looking forward to "meeting" her soon!

Blessings and hugs!!!

By Jen457
Posted September 2, 2009 at 11:18 am
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JK,

My heart goes out to you and your family. My Mom was just diagnosed with Ocular Myasthenia Gravis and she is 81 and in good health otherwise. I have been dealing with cancer since '94 and my Dad had a stroke in '95. She has helped both of us get through treatments and set backs. She is having a terrible time dealing with this. I know she would never go to a support group either. We are on the one step at a time plan. Last night when I was talking to her, she started to cry. I just told her that she is going through a rough patch right now and she needed to hang in there. She will not see the neurologist until next Wednesday. I told her the waiting is the worst. Once you have a game plan it gets much easier. Also, we made plans to go to a dinner theatre about a month after her appt so she has something to look forward to. I always have something on my calendar that I am looking forward to. One thing I have found about support groups, no matter how bad you are feeling, there is always someone there that I can say, "Thank goodness I don't have that problem." They also give you tips on dealing with treatment and/or the side effects. Last night the discussion was on chemo brain. It was the best attended group meeting of the year. (Make lists, use associations, crosswords are better than sudoku but keep your brain engaged.) Also she noted that people with a higher intelligence or people that worked in accounting or thinking jobs reported much more problems than people with blue collar jobs--I thought that was interesting. Now what I saying....... :) Good luck to you and your Mom!

By Mom82
Posted September 4, 2009 at 10:00 am
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I can relate to "my mother is not a fighter". I don't know how old your mom is, mine was 82 when she was diagnosed. She had tried to commit suicide, just a month or so before being taken to the hospital for bowel blockage, which turned out to be caused by advanced ovca. So she was down already before the diagnosis. And to make it even worse, 2 weeks after surgery and debulking, the day before she would be released from the hospital she had stroke. I live here in the US and she lived in Belgium. It was very hard not being able to be there on a daily basis. She decided not to have any treatment and I respected her decision and supported her all the way. That's all I could do for her and I know that it helped her more than anything else could have. In my mom's case it was just senseless to try to convince her to do something. In her mind she was ready to go and did go peacefully. I was there when she left this world and we had great talks, laughs, tears before, but accepting her decision made things so much better for both of us. She too only wanted to know that I loved her and the best way I could do to prove it to her was acceptance.
Your circumstances might be different from my mom, maybe yours is clinically depressed (my mom was too, for years, and would not see a therapist or anything). It was clear that she was "done living" even before the diagnosis, so for me the journey from there was clear-cut and I just went along and helped her that way.
I am not saying that you should not push your mom to fight back, you know her better than anybody else, and in her case maybe a support group would help, if she accepted to join one (my mom would never have accepted either), but try to figure out what she really wants and go along with her wishes. Some people just don't want to fight and that's ok, it should be their decision.

Welcome to Inspire!

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