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kikz's picture
kikz
Posts: 1266
Joined: Jun 2010

I had my yearly checkup with my surgeon on Thursday. I love him and although he is frank, he is also encouraging. He mentioned that my CA 125 results were trending downward since I began the Tamoxifen in July. I said except for the current one which rose from 24 to 31. He shrugged and said, same thing. I said, you say!

I told him I know he doesn't have a crystal ball but what did he think was happening? Well, big mistake. He said in time the tumor may become resistant to the drug and start to grow or something would show up somewhere else. He said I would be on chemo at some point and that was 100%. I knew all this but I for some reason it is not what I was expecting to hear that day.

I left very upset and could hardly control my emotions as I drove the 30 miles home. I thought of going to my cousin's house and breaking down but I didn't want to give in to the fear. When I came home my mom asked how my appointment went. I told her that my doctor had taken the opportunity to remind me of my bleak future.

The next day I had an appointment with my oncologist and soon after she came in I lost it. I told her I didn't know why I was so upset that he hadn't told me anything new. Then it dawned on me. I thought this tumor would go away. I am fully aware that the cancer will more than likely show up again but I had built up expectations of remission for this recurrence. I had even told a friend the other day that I wondered when they would decide I was in remission. Ok, I know I am not going to win the war but I thought I could win this battle. It took the wind out of my sails.

The doctor told me that we don't know if the drug has stopped working, we have to wait for more results. If it does there are other estrogen blockers to try and after that there are other drugs before we resort to chemo.

The surgeon as well as the oncologist believe in waiting to use chemo until the time I become symptomatic. I understand that but I try to explain to them the fear that gives me since I was mildly symptomatic at diagnosis yet was full of cancer. The surgeon also stated that in the UK and here some choose not to have the CA 125. He said if I hadn't had it I wouldn't know I even have a tumor right now because I have no symptoms. I said I understood that concept but don't think I could handle not knowing, I would still worry.

The oncologist gave me a talk about "compartmentalizing" the cancer. She said you have to find a way to get it out of the forefront. I said I am normally upbeat (we ladies could write the book on that) but this just hit me hard. As I said, I thought I was winning this battle and who knows, maybe I still am.

So I am still feeling a little down and hope that as usually happens I absorb the feelings and move forward. I found myself having "what's the point?" thoughts but tell myself I am ok today.

This episode has also cost me money. I am having difficulty saying no to myself. First the makeup, then a red jeans jacket and yesterday a red coat.

I have also been eating whatever. As you may know I am a Weight Watcher and have been struggling of late. These last few days I lost the struggle. Thank God I have a meeting on Tuesday where I can ask for help.

Sorry to go on. I just had to let it out and who understands it better than all of you. I am so glad you are here. I promise to come back with happier thoughts soon.

Love you,
Karen

ptharp
Posts: 190
Joined: Oct 2012

I am sorry Karen you are feeling down. I have learned very quickly that our lives are filled with many ups and downs with this nasty disease. Do you think you should get a second opinion. I am with you I would not want something sitting in me. I would want something done with it right away. Try to do something you love tonight to make yourself feel better.

lovesanimals's picture
lovesanimals
Posts: 1208
Joined: Sep 2011

No need to ever apologize for the "tone" of your posts! We're always here for you and for all of the good, the bad, and the ugly. I completely understand what you say about the CA 125. When I was first diagnosed, it took me completely by surprise and I realized in retrospect that there had been some "whispering" symptoms that I had not recognized as cancer. I don't trust myself now to recognize potential symptoms, which means I'll keep getting my CA 125 checked regularly.

I noticed that your doctor said that the tumor "may" come back. As you said, no one, not even our doctors, have a crystal ball, to know for sure what will happen to any of us. In the meantime, if the cancer should come back (and I'm not saying it will), I know you will find the strength within yourself to be able to deal with the news and to fight it. My friend, who is a nine-year (and counting) stage 3c survivor, has shown me that it is possible to have on-going chemo and still love life. In the last couple of years alone, she and her husband have taken a cruise to Alaska, traveled to China, Ireland, and Italy, and she shows no signs of slowing down.

I understand that you feel bad (guilty?) about the spending spree and food. I don't blame you for doing what you did. When we are feeling a lot of stress and anxiety, we go to our "comforts", and in times of need, we should be able to do that!

I hope you're able to get some sleep tonight. Tomorrow truly is another day.

Hugs,

Kelly

kimberly sue 63's picture
kimberly sue 63
Posts: 388
Joined: Apr 2012

Karen, I am so sorry that you have had such a down ward turn and emotional drain. It is all a risk for all of us to face reoccurance and struggle to maintain remission. None of us know our future. If you think about it we didn't know it before ovca either. It is just that the experience of ovca throws the thoughts of our own mortality right in front of us and makes us think about our mortality. It is scary to have the question in our mind of what if, when if, how if? But we can't live that way; we have to live....Remember every day scientists are making progress in treatments. We today with ovca have a better chance of long survival than those before us. Diabetes use to kill people in 3 months, now they live a long full life with appropriate treatment. We too can live a long full life with treatment. So hang in there, your tumor must not rule you. Use your strength and live as never before. You make a difference!! Kim

Radioactive34's picture
Radioactive34
Posts: 387
Joined: May 2011

Karen, I am sending you many hugs. I wish we lived closer to each other, so we could drive to each other's home and totally break down. I think that is hard to do with family and friends. I count our teal sisters as friends. Friends that understand.

I love my family and my friends, but I do not share all my battles with them. I do not share with them how much of a roller coaster this is. It has too many dips and turns. There is a gift in having the freedom to just break down and not worry about whether you'll hurt or discourage the person you are with.

Normally, I just vent here when I am scared. That fills a role, but it is not the same as talking to someone. A shrink fits the role, but still it is not the same.

Hugs, and many a prayer going out to you.

poopergirl14052's picture
poopergirl14052
Posts: 1142
Joined: Nov 2010

You can do this. I know it is tough..I am right here with you Stay strong...Val

Cafewoman53's picture
Cafewoman53
Posts: 732
Joined: Jul 2010

This is one tough road, I try not to think too much about the bad things that are ahead but hang on to what is good for. now. This cancer sucks big time and I will most likely have some sort of treatment for as long as I can handle it.
I agree with you about not waiting to be symptomatic til treatment and my
doctor agrees. You are doing great ! , everyone has to lose it once in awhile just to relieve the pressure. Love the red theme ! You do not have to be upbeat or happy ,your feelings are important if you try to ignore them they will find a way to come out anyway. I'm mad , mad at the cancer, mad that the treatments stink, mad that people think they have the answers ,mad that I will never look like my self again ( okay that one also hurts)
All that being said you are winning , everyday we are here to enjoy this world is a victory.And please don't forget hope, it may not be mistletoe. but it may be right around the corner. A breakthrough will come someday why not in time for us?
I like the happy,sad cranky,hopeful but most of all sassy,dressed in red Karen.

Colleen

kikz's picture
kikz
Posts: 1266
Joined: Jun 2010

you all for your words of encouragement and support. I am feeling better. I have to remember that I take time to process information. For example my first response to things is usuallly no. Then when I think about it for awhile, I think why not? It was important to learn this about myself.

As I said I think it was the expectation that I was headed for remission (and maybe still am) that made my surgeon's words get to me. I have been clinging to the words of my surgeon from April when my CA 125 began to rise. He said that if I had a recurrance it was highly likely that it would go back into remission with chemo. I just looked up the email. I had remembered his words but forgotten the word "chemo."

I have decided to downplay the CA 125 results. I wait for it to come in the mail about ten days after the blood draw. When it is good news I tell everyone. I'm not going to do that anymore. It is just a number and the number this month means nothing in the grand scheme of things because it will more than likely be different next month. I will tell my mom and my son and anyone who asks but I am not going to broadcast it. Maybe I can take some of the importance away from it.

Thank you once again and I am so glad I have you in my life.

Karen

lovesanimals's picture
lovesanimals
Posts: 1208
Joined: Sep 2011

So glad you are feeling better after having time to process the information. Whether you feel good or feel lousy, we're here for you. That's what I love about this board and the women on it - I can say anything and know I will get unconditional support from women who understand me.

Kelly

kimberly sue 63's picture
kimberly sue 63
Posts: 388
Joined: Apr 2012

you can always share with us karen, we understand!

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