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New to cancer

kimberly sue 63's picture
kimberly sue 63
Posts: 415
Joined: Apr 2012

Below is me when I first was digesting my new cancer diagnosis, and the diagnosis of ovarian cancer....Now is me 11 months later...The thought of cancer is still very overwhelming for me. I've been done with chemotherapy for 3 months. I have had MY FIRST OFFICIAL FOLLOW UP WITH MY ca125 and it was 6 the same as it was at the end of chemo...what a relief. I feel better the moment after the results....knowing I M STILL KEEPING THE CANCER AT BAY. It is a comforting feeling to know that I'm still strong. Howvever, the experience has changed me......I think of my life span right now in three month increments of time, enjoyment, difficulties, tasks completed, and what I have lived to this point. After being diagnosed with cancer, it is not so easy to live a life of pure freedom of ignoring your mortality. I am not sure it is a blessing or a curse right now. I still struggle each day at what could happen and what may not happen... I also still live life to its fullest with all of its ups and downs. I wish I could only live all the "shits" and giggles..but that is not real life is it. I have to take all of its ups and downs too. Cancer,no matter where it imprints, it makes a change in how we live. It is our resposibility to live it the best we can. Best to all in remission, and to those just beginning or ending the journey we all share. Kim

 

Hello, I'm new to the thought of cancer. It is not that I don't understand it or know about cancer. I am a nurse practitioner and I have many patient's who have experienced or continue to experience the diagnosis of cancer. However, I am usually on the other side, the provider giving care and information. I never thought I would be on the patient side and have to experience first hand. I am a healthy 48 yer old. I've never really had any serious illness. I had four babies all healthy and now grown young women. I breastfed all of them for a significant amount of time. Now, seven days ago, I had a complete hysterectomy, bilateral salpingo-oophorectomy, omentumectomy, and full staging for ovarian cancer. My surgeons say my surgery was curative and I am waiting for the staging results. Most likely I will be planning chemotherapy. That's my story...and here is my fear! I am sure all of you have experienced the fear. Waiting for results is agonizing. Being a nurse practitioner, I of course can imagine the worst. Not knowing your future stability is unnerving. Seeing the fear in my husband's and girl's eyes is frightening! Cancer is my fear and being so new with the diagnosis the fear can be stifling. Many of you are survivors and have already experienced the newness of cancer. If you have any advice or good thoughts, I would appreciate any messages.

Marnel's picture
Marnel
Posts: 42
Joined: Mar 2012

Hi Kimberly sue...

I am new too but a little further along than you are. I am newly confirmed stage 1c-3 clear cell and start chemo next week. The waiting is the hardest part because your mind can easily go to the bad place. When I first was told I had a mass (even before my diagnosis) I started labeling all of my belongings as to who I wanted them to go to because I was sure I was dying. That was only 6 weeks ago and now it kinda seem funny but not at the time. I would steer clear of reading depressing posts. I refuse to look at statistics on my life expectancy. Whenever I need a lift I go to the Inspire.com website and read the survivors stories. There are lots of people beating this disease and that's where I try to focus.

Stay positive!!!
Sending hugs to you.

kimberly sue 63's picture
kimberly sue 63
Posts: 415
Joined: Apr 2012

Thank you for the kind words. You are right about depressing posts or stories that unfortunately don't end well. I find right now those are hard to swallow since I am in the unknown side right now. Thanks again Kim

undertreatment2012
Posts: 126
Joined: Mar 2012

So sorry to hear. I too am fairly new, Diagnosed February 29th. What was supposed to be a cyst removal turned out Stage 1A clear cell, tumor grade 3. My advice is DO NOT look things up on the internet, it will make you crazy. And I am here to tell you, there are o answers,only statistics and that's not what you need. Seven days out from surgery I remember it well. Still hard to get around,trying to heal and then those words in your head. The best advice I can give you for now, from my experience is only try to focus on eating right, resting, walking, you know, building back up your strength. To me it sounds positive what they said about the surgery. Waiting is the hardest. You wait for everything, now waiting for the final staging. I had to pray for patience, but concentrating on healing from the surgery made the days not so long. I will add you to my friends list, please let us hear from you again.
FYI, I had my first chemo March 23rd, another one scheduled a week from tomorrow. Let me know if I can help you. I hate this disease for all of us, but together we can hold hands and get through it.

poopergirl14052's picture
poopergirl14052
Posts: 1185
Joined: Nov 2010

I have had ovca since Sept 2009. I am a nurese and felt the same way. I learned alot as my journey began. I got into remssion twice and now getting more chemo and looking forward to another. Ask question and learn and research what you need to know. The ladies on this board are very smart and can answer your questions and give a lot of love and support. Never give up hope..val

kimberly sue 63's picture
kimberly sue 63
Posts: 415
Joined: Apr 2012

You are right about the Internet! I especially can access all of the medical articles which are not always comforting when looking at the disease. I have had to find a balance between my scientific mind and my emotional personal mind to keep me positively focused. Thank you for the kind words.
How was your first session of Chemotherapy?
Kim

undertreatment2012
Posts: 126
Joined: Mar 2012

Well, I made it worse than it had to be. I have high anxiety and had my self worked into a tizzy!!!. The truth is,that day was not so bad.
I got a lounge chair, a tv,lunch,my husband. Take some magazines or crosswords or a book. They accessed my port and drew blood, then you wait for results to make sure it's a "go" and the Dr says to do it. When they get those orders, they gave me Ativan, tons of Benadryl and a steroid. Then, they wanted to talk to me, just conversation and I fell asleep mid sentence. Only for about an hour though. Mine lasts 6-8 hours but it really went pretty fast. I was drinking water the whole time so several times I was able to get up,take my pole with me and use the bathroom, felt good to walk around a bit. Then it was over. I really did not feel anything. This was on a Friday. Sunday I went to church and while driving home I started to feel ill. I have absolutely incredible leg pain from one of the drugs. The nurse said since they made that a generic it is now a common complaint. That's what hit me first, pain and weakness in my legs, I was scared because no body told me about that. At first I was not nauseated, just not hungry, but by Monday I was nauseated, but relieved by the anti-nausea meds. I had some dry heaves and diarrhea and trembling. This first time it was bad,needed someone with me on Monday, mostly to force feed me soup,crackers. just did not feel like getting up to get anything, and fluids are super important to help flush, fluids more important than food at this point, dealing with the nausea. By Tuesday afternoon, i actually felt hungry and started to eat. I went for a walk, short walk to try to work the soreness out of my legs and slowly everything subsided. If that is what I go through after treatment 2, then my attitude is, well I did it once, I can do it till they say stop, which i am to have 6 total. Hope this helps, Main thing is plan on a couple days AFTER to be out of commission, and a day or two after that getting on your feet again.

kimberly sue 63's picture
kimberly sue 63
Posts: 415
Joined: Apr 2012

I think my reply to you went under poopergirl response. Thanks for your kind words. Kim

slhwtx
Posts: 7
Joined: Apr 2012

I too had a removal surgery that was supposed to be just a cyst like growth on my left ovary. Turned out they had to remove the ovary. It was all going well my doctor said until he was about to bag it when it leaked. Of course at the time they didn't know it was a tumor. Once the pathology report came back the doctor called for me to go in and get results. I knew right then something was wrong. I now wait for my next surgery next week to have a complete hysterectomy so they can biopsy it all and stage the cancer. Once they do that I will find out about chemo and next steps. Researching online is no help as I find myself thinking and fearing the worst.
I have a good support network between friends and family, however, i find myself not sharing the down side of my feelings as to not worry them. I happened upon here and thought what the heck and now I am glad I did. I hope through this site, blogs and information here we can all help each other get through the may trials and tribulations coming our way.

kimberly sue 63's picture
kimberly sue 63
Posts: 415
Joined: Apr 2012

I am so sorry to hear of your experience and I feel the pains and grief that you are enduring right now. We are here to listen and support. Keep up with us,and we all will do the best we can.
Yes, Internet searches are not always helpful. Sometimes it can be quite scary to read the data on ovarian cancer.
I also think our site can be scary even though everyone on this site are helpful and quite intelligent about this disease, and are very compassionate. But sometimes, especially when your new to the whole concept of cancer,reading posts about women who have had a long fight and now continue to battle or have no other options can be very scary when you are new and unsure of what direction your own cancer will take. So look for posts with good news often...it does help.

Talk with your doctors and find out the specifics of your disease because all of us may have ovarian cancer, but each one of has a different cell type, stage, and all of us will respond to the cancer and treatments differently. So remember even if someone is not fairing well with treatment at some time it does not mean that is your path also.

Feel our virtual hugs and support.

Blessed_1
Posts: 6
Joined: Apr 2012

When doubts fill my mind,
When my heart is in turmoil,
Quiet me and give me renewed hope and cheer.
Pslams 94:19

jadav1956
Posts: 95
Joined: May 2011

AMEN...

AnneBehymer's picture
AnneBehymer
Posts: 739
Joined: Jul 2011

Amen

Mwee's picture
Mwee
Posts: 1325
Joined: Nov 2009

and welcome. I'm an oldie, too. Diagnosed 3C 5/2006. We know your fears and have seen the fear in our loved ones eyes. We'll be right here with you every step of the way. I can tell you that your life will never be the same. You are now entering post-diagnosis time and it isn't all bad news. I will be celebrating my 6 year anniversary since my diagnosis and surgeries and I can tell you that I love and appreciate every day the way I suppose I did when I was a child. I no longer exhaust myself with small drama. I think I'm actually learning patience and I know I've become a kinder person.

We know you're scared. Cancer takes away our control. We'll be waiting to hear about your staging results.
(((HUGS))) Maria

jadav1956
Posts: 95
Joined: May 2011

All of us react to chemo a little differently. Please don't be hard on yourself and take things one day at a time. Chemo is cumulative so it tends to build up in your body over time. Just go slow and easy. If you don't feel like eating...don't, but do drink liquids as much as you can. This diagnosis can be overwhelming but don't believe all the bad stuff. There are survivors out here. The ladies on this site are wonderful, and can help a lot. I was diagnosed last April as a 3c. I had 9 rounds of chemo every 3 weeks. I had a little break of about 3 months to give my body time to recover. I am now on a maintenance of once a month on taxotere and avastin. Please take care of yourself, and monitor this wonderful site. I too take each day as a wonderful blessing. It is ok to be scared. Most of us are too. Talking to others on this site is a miraculous blessing. These ladies are here, and they understand more than most. Take care and stay strong... Jackie

lulu1010's picture
lulu1010
Posts: 367
Joined: Feb 2011

Sorry to hear your diagnosis but glad you came here for support. I too have been a nurse for many years and I do think it does make it harder to be on this side. That said, it sounds good if the Doc said it was most likely curative. You and I both know they usually err on the side of caution.
Over the last couple years, I have heard many good survival stories. My doctor keeps telling me now that it is more of a chronic disease. I may have it but I will just live with it by treating it on and off.
They just told me of a patient that has been getting chemo on and off and still works and travels for the last 15 years.
I know how hard it is to wait for results but we will pray for the best. Stay in touch!

kellyh33's picture
kellyh33
Posts: 288
Joined: Jul 2010

Hi Kimberly,
The only advice I have for you is not to play Dr. Google. Do not google ovarian cancer. Everything you read will likely be negative. You need to think positively and believe you can beat down this beast.
Try to get a little bit of exercise everyday, even if it's a ten minute walk, drink as much water as you can, still continue to eat. Make sure your oncology team stays on top of your hemoglobin and if need be get on iron supplements or shots asap.
Most importantly, be your own advocate. If something doesn't feel right or you want something your doctor isn't providing speak up. Also you must be honest at all times with your oncologist. He can't help manage any of your symptoms if he doesn't know they exist.
Try not to worry about your children. They will be okay, let them look after you. It is the only way they will feel they have are able to help you. Sit with them and talk to them about your own fears, your dreams etc. My Mom did this with me and it is something I hold onto.
Good luck.
Kelly

Babyg1rl's picture
Babyg1rl
Posts: 19
Joined: Mar 2012

Hello Kimberly Sue,

I am sorry to have to meet you in this way. I found this website because my mom too has ovarian cancer and it was found pretty late in St 4. She is a retired RN and I am still currenting working as a RN. We never saw it coming. God will not give you anything that He feels that you can't handle. I look forward in reading your future post of you being in remission and a member of NED (no evidence of disease). Your family, your friends, and this community on the website are here for you. God's speed and good luck.

kimberly sue 63's picture
kimberly sue 63
Posts: 415
Joined: Apr 2012

You are right about how ovarian cancer can surprise you. Thank you for your wonderful words. I wish the best for your mom too. Take one day at a time.
I find out my stage and cell type on Thursday.

AnneBehymer's picture
AnneBehymer
Posts: 739
Joined: Jul 2011

This must be some what harder for you than us or maybe not harder but you are seeing this at a different angle than we do. Some of us have not delt with cancer before you have help treat it. You know how people come it and how they leave, you know what it can do to their bodies and their lives. You so need to be lifted up in this and we are all here for you and you can really be here for us because you have answers that could help us. When you are well enough and ready to give answer but right now you need us, you need to be comforted and we are here for that. Please come back as much as you need we are here.

Love, Hugs, and Prayers
Anne

kimberly sue 63's picture
kimberly sue 63
Posts: 415
Joined: Apr 2012

You are so right about me! I do know what the best and worst can be and I have seen my patients endure cancer treatment and also die from the disease. It is the unknown that gets me every time. Right now it is the unknown path report...which I will find out tomorrow. The unknown of what the cancer wants to do be nice and go away with treatment or be stubborn and challenge me at every aspect of care. One feels quite helpless in the presence of cancer. I don't like this feeling. I prefer to be in control and I don't like change. I'm feeling extra emotional today, considering I have my appointment tomorrow. Tomorrow my life can really change and dealing with cancer maybe made a reality. These last two weeks have been a change and hard at times, but overall quite manageable. Me and my husband also could keep saying there is still a chance all is ok. But tomorrow is the day of truth and I am scared!

Mwee's picture
Mwee
Posts: 1325
Joined: Nov 2009

sending good karma your way............ ((HUGS)) Maria

undertreatment2012
Posts: 126
Joined: Mar 2012

thinking of you today, anxious to hear what you find out

AnneBehymer's picture
AnneBehymer
Posts: 739
Joined: Jul 2011

We all are that way before test I will give you a word of advice that my mom has given me through out so many different things. Breath in thru your nose and out your mouth. She also will tell me not to brorrow trouble from tomorrow because each day has it's own troubles. I hope this helps but one thing I know will help is I will pray for you tomorrow and please come back and let us know either way it goes.

Love, Hugs, and Prayer
Anne

kimberly sue 63's picture
kimberly sue 63
Posts: 415
Joined: Apr 2012

Well, results are in...I have been staged with serous papillary carcinoma stage IIIc. The only abdominal lesions were within the omentum,ovaries, and fallopian tubes and that was all removed.I had nodes on my diaphragm that were quite small, but the pathology of those was negative. I had positive abdominal washings which is a given. The good news is that all of my lymph nodes were clean. My oncologist is confident we can keep it under control and my type is very receptive to the chemo-therapuetic agents. So all in all it is a good result for ovarian cancer....but the sense of doom is still there!! The prospect of chrmotherapy is overwhelming.
She (my oncologist) wants to chemo-dense treatment which means day one I get carbo/taxol, then weekly taxol. This is the cycle of 3 weeks. Has any one done it that way?

fightermom
Posts: 5
Joined: Feb 2012

Hi Kimberly,

Amazingly enough we received my moms final pathology report on Thursday as well, and she was also diagnosed with serous papillary carcinoma stage IIIb. She will be starting chemo in three weeks also doing the carbo/taxol, then weekly taxol ~ 3 week cycles for 6 rounds. I would love to keep in touch and share information with you as we seem to be going through this together.

All my best,
Stacy

fightsma@cox.net

kimberly sue 63's picture
kimberly sue 63
Posts: 415
Joined: Apr 2012

I would also like to keep up. How do I save you as a friend?

fightermom
Posts: 5
Joined: Feb 2012

Please feel free to e-mail me at fightsma@cox.net

Stacy

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