Post Chemo Blues

Hello all,
I've been following postings here but not responding alot - first I want to say thank you to everyone - your insights and strength and information about OVCA have been inspiring and comforting.
I am 5 weeks out from my final treatment (surgery followed by 6 carbo/taxol treatments) for my Stage IV OVCA. I worked hard to exercise, eat well, rest and take good care of myself through all that; thankfully my CA125 was down to 11 and PET/CT scans looked very good. I looked forward to celebrating, and to some extent I have. However, I've also found myself more fatigued and plagued by various aches and pains than I would have expected at this point - and am puzzled and disconcerted by this. I also find myself somewhat lost without the intensive treatment around which my life revolved for so many months. One of the docs I spoke with cautioned me early on that there is often a letdown following chemo, and I wonder if this is what I am experiencing. In many ways, this feels like the first opportunity I've had to stop and breathe since I received the diagnosis. I find myself feeling sad and crying often and wonder if all this is just beginning to hit me and I am grieving. Has anyone else experienced what I am describing? And how long does it take to stop having the joint aches/neuropathy/skin irritations/hot flashes/fatigue? Also, while I feel a real sense of accomplishment and relief in having finished chemo so successfully, I also feel like I'm just starting with the more nebulous anxiety about recurrences and how best to live my life to put that off as much as possible. Any thoughts anyone? Thanks for your input.
Mary

By ReneeK1
Posted August 5, 2008 at 12:43 pm

Yes, yes, yes, and yes. When my chemotherapy was done and my respond was great, my doctor had a psychologist from the hospital call me. First thing she asked was, "you're doing well and everyone is happy, right?" I said yes. And she said, "But you are feeling anxious in spite of it all, right?" And I said yes, how did you know! (I hadn't said anything to the doctors but kept it to myself) She said it's totally normal to have this period. I also agree with you that this is the first opportunity to stop and grieve. During chemo, you're running back and forth to get chemo, struggling to stay well, just struggling to SURVIVE - then you get this period where you DID survive and you are doing great! For me it was almost like waiting for the other shoe to drop. OK, I did TOO good, what next (dread thoughts).

I hate the dread thoughts. They are the worst thing for someone energetically. But at the same time, I read, and my psychologist told me, that being "positive" all the time is not always the best thing since there has to be some burying of emotions of you are ALWAYS forcing yourself to be positive; expressing ALL feelings, good and bad and letting them run their course seems to be the best according to latest research.

I've been journaling and it helps. That journal is mine and mine alone to pour my heart out.

My body aches in ways I would never have imagined before... I have a post about joint aches in the treatment section of this board. Sooo many people responded that they feel the same way. My aches and pains have been decreasing slowly with exercise, stretching, I also take ECGC? (green tea pills), curcumin and Fish oil capsules daily, which help with inflammation.

I also am very concious of what I eat; whole grains, LOTS of fruits and veggies - if not organic, washed well to get the pesticides off them. And plenty of fluids, alot of green tea.

I don't think the fear of having a recurrence ever goes away. Maybe some who have been in remission longer can let us know if it does in the future. For now, everything I read or hear, remotely related to cancer, makes my stomach sink.

The best advice I can give that was given to me by a 11 year cancer survivor is: Do NOT ruin your today by worrying about tomorrow. I live by those words.
I try to vow each morning to take just this day. I am fine today and I'm going to enjoy it.

I also drew a huge picture on a piece of paper that is a wheel with spokes. On each spoke, I wrote down what's in my control for my health. I.e. one spoke = conventional therapy/ chemo. the next spoke = acupuncture. The next spoke = eating well. The next spoke = light exercise. The next = Reiki, Qigong, spending time outdoors to nourish myself, and so on and so on so that my wheel is FILLED with positive things I am doing for myself.

Sorry this is long, but hope something I said is helpful to you. Best of luck and I am sending my good thoughts for a great outcome for you.

By ReneeK1
Posted August 5, 2008 at 12:48 pm

One more thing I want to share, this post I posted a long time ago, you can connect with other people who have survived ovarian cancer (this is how I got in touch with the 11 year survivor I spoke of above- she was great!)

http://www.inspire.com/groups/alliance-ovarian-cancer/discussion/i-want-to- share-with-all-of-you-an-organization/

By jeaniet
Posted August 5, 2008 at 4:39 pm

Hi Mary.....It's me. I don't have much to add other than what has been hitting me is EXTREME irritability. I guess a better word would be PISSED OFF. I'm pissed that I don't have my long, beautiful hair. I'm pissed that life is not going like I thought it would. I'm pissed that I have this ridiculous sense of entitlement, which comes out of me as "I have cancer so I should get whatever I want, whenever I want it." I'm pissed because I am moving out of state. I'm pissed because due to my retirement, we don't have the financial resources we had before. I'm pissed that I have to even think about recurrences, maintenance treatment, etc. I'm pissed at my husband a lot and that pisses me off.
I'm not sure if it would feel better to be sad and tearful like you are, or pissed like I am.
All I DO know is that I know you, and you are strong, and wise, and you will get through all of this. Renee sounds so much like you, doing so many healing things. I think it makes sense that now that the cancer crisis is over, that we would probably be in this state of mind. I am not a religious person, but I do have faith that this will pass, and we will find a way to live our lives well, and fully, and peacefully. It will just take some time I believe.
I hope that your physical issues will resolve quickly, because I know that is making this all that much harder.
Please let me know what I can do.........Jeanie

By PamRn
Posted August 6, 2008 at 8:09 am

Dear Mary & Jeanie
When I read your posts I felt like I was reading something I wrote, my private thoughts magically in black and white! I'm 6 months out from treatment and some times it's really tough. I guess it's just the nature of the beast. Thank goodness for a place like this where we can all be encouraged and find out we are not so "weird" after all!! God bless us all!
Pam

By FavoriteAunt
Posted August 6, 2008 at 9:39 am

Hi Mary,
What you are feeling is very common. Funny how the chemo room and nurses/docs become a security blanket. Naturally we are thrilled when we are freed, but you really don't want to let go. It's hard to start to live with the disease on your own. Having the comfort of all of them around all the time is a big change from dealing with it alone each day. It takes some time but you will, though I must admit the feeling never completely goes away.

For me it always takes a couple of months before all the side effects finally leave my body. I've done it twice and found it to be so in each case.

As for the fear of recurrence - unfortunately that is something we all live with every day. You will gain strength and confidence as time passes, but the nagging fear is always there. My onc. always says to live your life and not look at statistics because each person is different. I try to do that, but I admit it is hard. I had a 6 1/2 year remission (much to the surprise of my docs) and then a recurrence. And even though I experienced no symptoms, it was almost as if I was expecting it to show up.

It's a tough disease, but try to stay strong and be positive. When you feel well, enjoy your life and be good to yourself - you deserve it. God has a plan for each of us, so trust that He will help you along the way. Wishing you all the very best, Jo

By foxynana
Posted August 6, 2008 at 7:37 pm

You have all done such a great job expressing everything we all feel! I've been off of chemo since May and my hair is starting to come back, for the third time! Every time it is different, unfortunately it's getting whiter and whiter with each recurrence. After my first treatment I was just getting my hair back and my husband had a serious stroke and after three months passed away. I had not had time to think of myself as a survivor, and after grieving for my husband, 6 months later at a checkup with my onc.gyn, I just lost it in his office. I cried and cried because I hadn't been able to enjoy the fact I had overcome the cancer. I had a three year remission, then a recurrence (it hit me like a brick) that required debulking surgery again and another surgery a week later to repair a problem with my gut. More chemo, I finished that and was just getting back to "normal" when I had a swollen lymph node (another recurrence) in February of this year. More surgery and chemo!
Now I don't let anything escape my notice, I live everyday the best I can despite the aches and pains and fatigue. Each time it has gotten a little harder to recover from the effects of chemo, but I try to do something fun every day, and laugh often. I'm now doing a totally plant based diet from the Cancer Survivors Handbook, I had decided I don't want chemo again and I want to KEEP my HAIR. So I'm doing what I can not to have another recurrence.
There are many facets of grief I have found, and I think we all go through them more than once. Sadness, fear, anger, acceptance, faith, hope--embrace each one as they come and try not to dwell on them longer than necessary. Look for regular distractions to keep ourselves SANE. Love & prayers to all of my dear "sisters",
Georgia

By SuzanneDimlow
Posted August 7, 2008 at 6:42 am

Hello Mary,
I too felt alone and afraid after finishing my treatment.
Your story is the same as mine. Stage IV, hysterectomy/debullking surgery, 6 treatments carbo/taxol and I am now 1 yr. 3 mo. out of treament and truly amazed that I have made it this long. I have lost 6 friends due to cancer (none Ovarian) in this past year and now I think I am having survivor's guilt on top of everything else. I can't help but wonder why their outcome was so bad while mine is good. I have this need to give back. I am volunteering at the chemo office to help women during their treatments. I don't know why but it helps me immeasureably. I also serve HIGH TEA at the oncology doctor's office once a month in memory of a woman who lost her battle with OVC last year. We call it "Julia's High Tea"; so named by her family.

I refuse to wallow in pity for myself BUT don't get me wrong the thought of recurrance hangs heavily over my head just like all of my OVC sisters BUT I refuse to sit back and WAIT for IT to happen. I will not change my eating habits and be reduced to eating SCARY STUFF because of this disease. I WILL HAVE A GLASS OF WINE EVERY DAY TO CELEBRATE MY LIFE! If OVC is going to take me in the end then I will be damned if I am going to spend the rest of my healthier time "chained" to what could happen to me because of this disease. It's OKAY to be PISSED OFF like Jeanie but she SHOULDN'T let it consume her life. Life isn't worth living if you are PISSED OFF all the time. Somehow we have to find a happy medium. Yes we will all worry about recurrance and try to prolong our lives by getting healthier but at what price? LIVING IN HELL WHILE HERE ON EARTH? NO WAY, NOT ME, I am going to live and live hard. I WILL BE HAPPY. I will walk in nature everyday, I will smile everyday, I will give back in some way everyday, I will be good to myself, my husband my children and family EVERYDAY while I can. It is all I have going for me. Afterall I do not have control over my destiny, ONLY GOD DOES.
But you know what, WE HAVE TO LIVE OUR LIVES WHILE WE HAVE SOME CONTROL OVER IT. If we are healthy enough to sit here online and type then we are well enough to enjoy life. Don't waste it wallowing in pity. Get out there and enjoy the time you have left. REMEMBER YOU ONLY HAVE THIS ONE LIFE. You won't get another chance. ONLY ONE GO AROUND. Don't waste it.
Good luck Mary,
Suzanne (AKA Pinky)
PS It is 6:30 AM and I am headed out for a walk.

By katie52
Posted August 7, 2008 at 9:36 am

Hi,

Everyone has pretty much expressed how you feel once you complete chemo. When I was finished my doctor suggested that I see a doctor of integrative medicine for follow up care. I saw him and suggested a regime of supplements that he felt would help strengthen my immune system. I ended up not taking them because instead I entered a clinical trial, but I suggest that see if there are any doctors near you that can help you with a post-chemo treatment plan. The doctor that I saw was Dr. Gary Deng at Sloane Kettering.

Good luck.

Katie

By momanderson920
Posted August 8, 2008 at 1:54 am

Thank you for sharing this. I just finished my 6 rounds of chemo and found myself crying and upset. I too have had strange (upper GI in my case) pains that my oncologist thinks may be something non cancer related and I pray she is right, but I guess I conditioned myself to get through the treatments having an unconscious expectation of a miraculous back to normal recovery at the end. I cried one day like a young girl going through PMS for the first time. I am so glad I am not alone with this reaction. As you said, my whole life too has revolved around the cancer and treatment and now that has changed. I feel like "what do I do now" since I am not back to normal in how I feel and still don't know how well I am. Keep us posted on how you are doing. Thanks for sharing.

By MoYeah
Posted August 8, 2008 at 4:56 am

Mary,

I’ve said this before, but I think this is the time to say it again…

We are the bravest, strongest, and most beautiful women in this world. We are a class above most… we have endured unimaginable pain; stress and anxiety; looked at death in the face; survived being poisoned every 3 weeks; and did it with dignity and no hair! Sure we’re fatigued and plagued by various aches and pains; but that’s normal; and, what better way to know… you’re alive! Just keep saying… I will prevail! We are survivors!

There is no cure for OVCA; we can only try and control the growth of the cancer. That alone can be a very scary thing to hear; but, don’t let cancer control your life. We are not cancer, just as I say… We are not our hair. There is so much more to us.

Mary, look how great you are, stage IV and you’re fighting it. Don’t be afraid to celebrate every day of this life. Do what you love! Anything can happen… It’s up to you to make the best of it!

I’ve never been in remission; never had a break from chemo treatments. To tell the truth I think it’s easier on me. Since Sept, 2006, I understood that my chemo was my partner for life. I know what to expect. Chemo and I must always travel this jouney together in order for me to live. It’s been hard but my years with cancer have given be self discovery, clarity, more joy, and the chance to meet some truly amazing women…you!
Hugs, Jill

By carlacperk
Posted August 8, 2008 at 10:50 am

I have felt so much of the same things you are feeling now. I still have one more chemo treatment to go through (2nd time for me). Ovarian cancer is rough, the constant fear of it coming back can at times be unbearable. My friend recommended a book called
Love, Medicine and Miracles by Bernie Siegal (sp) It is an incredible book that I think will help a lot.
Take care and remember that you are not alone.

By annejulia
Posted August 8, 2008 at 4:15 pm

Wow.......I have been on chemo for two years and now they think finally I will get off of it. Catscans every two months along with blood testing and exams will be my future. I was already wondering how I would deal without the cushion of having that medical support system by my side. Actually I was starting to feel anxious already about it. I have my last treatment this coming Monday and a catscan Wednesday........Oncologist visit and an appt with my surgeon and that should be it unless I run into a problem. I am so glad you all have voiced your thoughts about this because I was beginning to think I was going nutty. I should be Happy, I am thinking.......I guess it will come in time. I thought about My Safety Net no longer being under me. I am Stage 3c OVca..........it has been a long road.

I wish all of you the best and you gals are amazing.....it is great to know you all are there and understand the issues we all have. Thanks!!! annejulia

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