Fear of Recurrence Like No Other Fear

I wasn’t even finished with chemotherapy when I had my first panic attack brought on by the fear that my cancer had returned.

I had one round of chemo to go when I made a phone call to an acquaintance about the use of the fellowship hall at our church. It was one of those calls where we were trying to organize two events that were supposed to occur on the same day in the same place. In the middle of the discussion she yawned, just as I suppressed my own, and we both laughed. She said something to the effect that she didn’t know why I was tired but she was going through chemotherapy for breast cancer and was exhausted all the time.

“Me, too,” I gasped, as we forgot all about the meeting and began comparing stories. Seems she was dealing with a bit more of an issue than I was because her cancer was in her spine; she was metastatic, she explained, and yada, yada, yada. I didn’t hear anything else after the word metastatic.

Within 24 hours my back was in spasms of pain – real pain. I was sure I was dying from metastatic breast cancer. Even though I could intellectually connect my pain with our conversation, the connection was soon lost. My pain was my recurrence that had nothing to do with having just talked to someone who had metastatic disease. I had pain in my spine; that meant my breast cancer had metastasized. I was dying.

As I write this today, 27 years since my diagnosis, I can almost feel the pain. It was so vivid.

I called my nurse, Becky, and told her about the pain in my back and asked that she schedule a bone scan. She did.

Two days later my husband and I went in for the results of the scan and what I was sure would be confirmation that my cancer was back in my spine.

We arrived at the doctor’s office and Becky put us in a room. A few minutes later she must have remembered why we were there because she popped back in the room and said, “By the way, the scan was fine.”

At that instant the room erupted. My poor husband hissed at me to never do that again. I hissed back that he should spend some time in my body. And Becky said, in the ultimate understatement, “You guys were really worried, weren’t you?”

Worried, no; sure I was dying, yes.

A bit of explanation about what this fear does to a relationship such as ours. I was the information processor in the family. My role was the researcher. I knew the details on where to go and what to do, and when I said something, it was true. So my husband counted on me for information, and when I told him information about my cancer, he believed me. So, if I said I was dying, he believed me. This was a new world for both of us.

We went home, and I noticed somewhere between the doctor’s office and home that the pain was gone. No one will ever tell me the mind and body are not connected.

I continued to deal with fear of recurrence almost weekly for the first year. My triggers were the usual: a strange ache or pain (ANY ache or pain), a celebrity was diagnosed, a friend was diagnosed or learned her cancer had metastasized. Actually, any mention of cancer by anyone usually sent me into hours of “what ifs.”

Remember that part of what makes fear of recurrence so difficult is that pain is the symptom of a real recurrence. I also had strong anniversary reactions that resulted in panic attacks. Holidays would often bring on depression – would this be the last one I would spend with my child?

My worst fear was around Easter, and I have no reason why except it was spring and new life was all around, reminding me once again that mine could be shortened at any moment.

My fear of recurrence persisted for years. I decided I would do a Thelma and Louise before I ever allowed my family to see me wither and die should my cancer recur. Then I had a friend who died of breast cancer and, while not beautiful, it was a healthy death, and it made me reassess my decision about my own life and death.

Then about three years after my treatment ended, I finally couldn’t bear the fear any longer. In my support group, we called it crash and burn. I cried all summer. I talked to the therapist who facilitated our support group about how to stop being so afraid.

Then she asked me a logical question: What was I afraid of? I knew it was all about my daughter Kirtley and her life. I didn’t want to leave her without a mother. I knew my husband would be a good father, but I wanted to be there. I wasn’t afraid of dying, I was afraid of leaving my daughter.

My therapist suggested I think of ways to resolve that. So, I enlisted friends who would take my place in the event of my death. My friend Terry would be there for her education, assisting with school choices and any education difficulties Kirtley might have. She would be hands on to help Kirtley with her school work and to talk to her about learning and keep the joy of learning alive. Terry ran a Montessori school, and she loved learning.

Terry, knew what I meant when I called, and, through my sobs, asked her if she would be Kirtley’s education mom. She said she would, of course.

Next came household skills, cooking, sewing – all the things I have never been able to do, but wanted Kirtley to do. I called her Godmother Diana who could cook on all four burners at the same time. Diana can knit and sew and make all kinds of things. She too said, “Of course.”

Next came my friend Dianne who was already raising two girls, one of them my god daughter Allison. Oh, the shopping trips they took and the fun they had. I had a miserable adolescence in a family where my mom wanted to make my clothes, and she loved bright colors and stripes. There was no money for the beautiful fashionable dresses, but I was determined that my daughter would dress in the latest fashion.

Dianne said yes, she would be sure Kirtley was dressed like all the other girls when she hit adolescence.

My friend SueAnn was to be her spiritual advisor, the one to answer the questions about our mission in life and spirit’s plan for us. A Methodist minister, she assured me, she would be present for Kirtley should I not be here.

When I called these friends, none of them tried to reassure me or tell me I was going to live to be 100; they just agreed to take that part of Kirtley’s parenting if I died. It was amazing what it did for me. I felt free and almost buoyant about death. I talked to my support group and the therapist. What did it mean? Was it a sign that I was going to die?

No, she explained, it just meant that I had resolved my own death. She had heard the same thing from others who had crossed the invisible line from fear of death to acceptance of death. Did I want to die? No. Was I more prepared to die? Yes.

Kirtley will be 28 this month, and she can’t cook or knit, and she hates to shop, but we have had a few good discussions about the spiritual parts of life, and she made it through college.

And I am still here. No longer afraid of what the future may hold.

By Katy Latour

CureToday

September 17, 2013

 

COMMENTS

This is a very accurate description of what many survivors deal with. I have passed the 5 year mark and it seems like my fears increase as the years go by…. every pain, every pinch, scar tissue, is this new???
Thank you very much for expressing these feelings that are shared by many.
– Posted by Lynelle Buckner 9/24/13 1:12 PM

Thank you for telling your story. I am the opposite. My mom died of this disease when she was 53 and I was 23. I was determined to catch it “when” I got it. And I did. I had a small tumor and no lymph node involvement. Due to catching it SO early, my cancer was treated with a mastectomy and estrogen blockers for 6 years to prevent recurrence. Unlike you, it never occurred to me that I would have a recurrence. My doctor and I thought I was cured. Fortunately I am extremely in tune with my body and had been blessed with not having had much pain in my life. So a tiny little tingle under my arm that wouldn’t go away got my attention and lead to a fairly quick diagnosis of metastatic breast cancer in my spine. I have since learned that 30% of women who have early stage breast cancer go on to stage IV – even years later – regardless of their treatment. So while I wouldn’t want anyone to worry all of the time like you did, I also wouldn’t want anyone to think they are cured like I did – as they might miss a symptom that leads to quick diagnosis.
– Posted by Roberta 9/24/13 1:18 PM

Thank you so much for this blog. I actually feel like I wrote it! I can relate to so much of it. It’s actually a blessing to read this and to know that I am not alone or coo-coo in my daily battles with my mind. I am a 1 year breast cancer survivor with 2 girls ages 8 and 8 months. I too am so afraid of recurrence and leaving these 2 beautiful girls. I haven’t joined a support group or sought out a therapist yet, but my doctor keeps encouraging me to do so. I can’t thank you enough for the message that I am not alone!
– Posted by Heather Horning 9/24/13 1:33 PM

It is true. For me the degree of worrying is related to the time between scans and the result of the most recent scan. Those scans that show something “iffy” are the worst. It could be this, or could be that, but only time will tell. So, go home and relax (ha ha) for three months and come back for another scan.

I finally found a way to relax. Don’t see it as waiting, but as more time to live. I add more positive post-it notes to my bathroom mirror, write in my journal, and meditate. I find more to be thankful for and more activities to find joy from.

Those last two weeks before the scan, I psych myself up with daydreams of a clean scan and even write down the good news I expect to hear!
– Posted by Liz Kilby 9/24/13 1:33 PM

Thanks for sharing.
You’re such an inspiration and I know this article is going to help so many!
– Posted by diana devoe 9/24/13 1:34 PM

Thank you for sharing your story. You are a true inspiration.
– Posted by Kerri Minor 9/24/13 1:41 PM

Dear Kathy, we met briefly at lunch at the OCNA conference in July. You write so honestly about cancer and your life that I feel as if I know you. Thank you for this wonderful post. Your group therapist was so wise to help you resolve the real issues that were troubling you. After my late stage ovarian cancer was diagnosed in August, 2000, I just didn’t take a deep breath for four years. Four years!! To this day, 13 years later without a recurrence, I have never known if the other shoe would drop and I would recur. Gradually, I have come to realize that fear would not prevent cancer from returning, but it would lessen my ability to enjoy every day of my life. That has helped me put the brakes on anxiety for me. When I get anxious I schedule a tumor marker test (CA-125) and then I’m OK.

I answer telephone calls at the SHARE Ovarian Cancer HelpLine and speak to many women newly diagnosed or recently recurred or just plain scared all the time. Your way of handling the fear that wouldn’t go away will help me to help them. I thank you for helping me and all the women who will benefit from your insight.
– Posted by Judith Fox 9/24/13 1:42 PM

It’s that “waiting for the other shoe to drop” sensation each of us who has been diagnosed experiences at random intervals. It could be soreness from exercising, a reaction to a meal, or one of the little aches and pains humans have in everyday situations, but to us, it’s the real possibility that the monster has returned.

What seems most important is knowing that others go through this, too. We are not alone and we are not crazy. We are simply more attuned to the dreaded possibilities that exist for all.
– Posted by Ella Bartley 9/24/13 1:44 PM

We all have this anxiety about recurrence. In my case, however, I determined that after surgery, chemo and radiation plus meds, all that could be done had been. As I regained some of my strength, I went on “fast forward” to do as much as I could WHILE I could. I took trips to visit our daughter in Pennsylvania and saw our son graduate from high school and college. Flew to Texas to visit my sister (despite warnings of lymphodema due to flying), etc. etc. I accepted the fact that the “cancer” is ALWAYS lurking in the body and could show up again at some point, so I was going to live life to the fullest while able. I joined a support group, went to seminars to continue to stay abreast of new treatments and techniques, helped other friends who were diagnosed after me and discovered a “new spirituality” to help keep me mentally strong.

I am now a 7 year “survivor” with some bad eating habits and “vices”, but I completely trust that this was an “episode” in my life story and I refuse to be so careful that life becomes all fear and no fun – so, stay positive, have faith and have fun, and ALWAYS help someone else in their “time of need”.
– Posted by Claudia 9/24/13 1:44 PM

I am there now. I had non Hodgkin’s lymphoma 14 years ago and 2 years ago I was diagnosed with both breast and lung cancer at the same time. I had surgery for both followed by radiation. Chemo was treatment with the non Hodgkin’s. i have survived all 3 cancers. I have recently become focused on new cancer occurance. I am having a hard time doing anything other than basic functions. I am angry, depressed and frightened all the time. So sorry there others with similar problems but am so glad to have found you.
– Posted by Pat 9/24/13 1:49 PM

It’s been 5 years since my colorectal cancer. It was stage 3.I had 1 speck in 1 lymph node. Because of the chemotherapy/radiation before and after surgery I have nerve damage in both legs/feet. Recently during a bone scan they found a 1 cm lesion on my left 5th rib and one old and one new rib fracture. On my PET/CT scan they found a left splenoid wing meningioma over 1 cm in size. So i’m wondering what to do next. Has anyone ever been diagnosed with a meningioma?
– Posted by Sheral Johnson 9/24/13 1:54 PM

Wow, I cannot tell you just how much I needed to read that! I’m currently 4 1/2 years clear of my Breast Cancer and I cannot express how much the thought of recurrence has tormented me all or these years! You helped to put a new perspective on how to handle this situation and I am truly grateful. My journey post cancer has not been the best of journeys as I’ve been left completely disabled with severe peripheral and autonomic neuropathy and unfortunately for me none of treatments have worked or my body just doesn’t want to cooperate! So my daily struggles are trying enough as it is, and yet every time my head hurts or my back starts to hurt for any length of time, I’m freaking out! And you are right when you said that you were afraid because you didn’t want to leave your loved ones and I feel that same way! I just don’t know where to start in trying to help take care of those that I love when I’m gone because I we currently just moved to a new state and I haven’t been able to make any new friends yet. But this is our new permanent home, so hopefully in the near future I’ll be able to make some good friends who would help my loved ones keep moving on when I’m gone. I have come to terms with the fact that I’m going to die someday and I’m not afraid. I just know that saying goodbye is the hardest part of it. But, I’m still here too and I take it one day at a time and thank God each and every day that I continue on! May we all get the chance to grow old and see what is yet to come! Love to all of you who struggle or have struggled with this horrible disease! Don’t forget to “Fight Like A Woman”! Because that’s what we are, we are some of the strongest women in the world!! May you all be Blessed!
– Posted by Amanda Mason 9/24/13 2:03 PM

I’m a survivor of breast cancer now for 15 years. I praise God each day for his healing power. However, I do admit that I went through the same ordeal of thinking that everytime I had a pain somewhere in my body that it was a sign of cancer. We celebrated for the first five years of being cancer free and after that my husband said it was a non-issue. I pray that is stays a non-issue forever but if it does appear again I know that my Lord Jesus will be there to give me the strength and courage to deal with whatever comes my way. Thanks for your blog. It was very helpful.
– Posted by Barbara Warren 9/24/13 2:07 PM

I also have a meningioma and am a 4 year survivor of colorectal cancer, Stage II. A meningioma, though, is a benign brain tumor – it is in the lining of the brain and I was told by my doctors that it isn’t terribly uncommon. Mine was discovered accidentally last year during a brain scan for something else (not cancer related), and causes me no symptoms so besides monitoring it every few years, the doctors are leaving it alone, which is fine with me – who wants a craniotomy? I have to admit that while I do have some concerns about a recurrence, I do not dwell on it. I agree completely with the blog’s point of view – I am not afraid of dying – I just don’t want to miss anything! My husband tells me that I have changed since I’ve had cancer and become more assertive and willing to try new things. Get busy living is my new motto.
– Posted by Susan Deeke 9/24/13 2:57 PM

This could not have come to my inbox at a better time. You articulated every aspect of the fear of recurrence to a tee! I especially identified with how are spouses are at the mercy of what we communicate to them. I’ve put my poor hubby through the wringer!
Loved the article. Thank you.
– Posted by Jules 9/24/13 3:33 PM

I had a mastectomy in March 1982. I remember sitting at home recovering and wondering if i would be there to see the daffodils now coming up in my garden next year. I wish someone had told me that my tiny tumor and no lymph node involvement meant that it probably wouldn’t recur any time soon. In spite of a good prognosis I did worry. At every anniversary I heaved a sigh of relief. It was 10 years before I finally quit worrying. At 25 years I eas positive I had it beat.

I’m not telling the rest of the story to scare anyone but to reassure those worrying about mets. Thirty per cent of us do become metastatic, and I got that diagnosis at 26 years. It was in my liver, on the surface of my lung and in lymph nodes in my chest. My doctor put me on Arimidex which prevents my body from making estrogen. The tumors began to shrink slowly but steadily, and two years later there was no evidence of disease, and there still isn’t five and a half yars later. Needless to say the anxiety was awful for the first two years. What has helped is that I found a wonderful support group for metastatic women. It is a amazingly intimate group in that we talk about living and dying with cancer. Seeing others go through the dying process has been uplifting and has made death a much less scary proposition. I still have what we call scanxiety, meaning nervousness before every scan. My doctor will probably stretch the interval out to yearly after the next one and I’m ok with that.

I blame my mets on hideous hot flashes that started a few years after my surgery. Every time I tried to cut back or go off HRT the hot flashes came roaring back. Now there are other treatments for hot flashes that don’t promote breast cancer. Between a blood pressure patch, acupuncture and Chinese herbs the side effects of treatment are minimal. I know the other shoe could drop sometime, but I want you to know that it is possible to live well with cancer and to get over the fear of dying.
– Posted by SPiper 9/24/13 4:13 PM

.Soon after finishing treatment for 4th stage throat cancer I felt a lump in my throat,it was scaring.Soon after I had swelling in my throat and pain, It was a infection.Both times it scared the hack out of me and both times there was something there but it was not cancer.Someday I hope that I can wake up with a sore throat and not think that the end is near
– Posted by Paul McBee 9/24/13 6:29 PM

Thank you so much! I finished primary chemo for NHL almost one year ago and am getting maintenance chemo every other month for 2 years now. All my scans have been clear and I thank God, but I have almost been positive my cancer was back the last several times I went for scans- so happy and surprised to hear the doctor say everything looked good again! I am a counselor and was a very optimistic person prior to cancer- am still both now, at least on the outside- but no one really knows how much a cancer survivor thinks about recurrence until they have been there. I saw this quote somewhere and saved it because it meant so much to me, but unfortunately don’t know the author:
“you won’t ever go back to being a person who never had cancer, and that is something to grieve, no matter the outcome.”
Having cancer has changed me for sure, and some of the ways are positive, but I will be so grateful to get to the point where I don’t think about it so much.
– Posted by Laurie 9/24/13 6:39 PM

So glad to have read this blog. I’ve had follicular non-hodgkins lymphoma for 4 years. Went through blood transfusions, fainting spells, chemo, etc. Have been on Rituxan maintenance for the last 3 1/2 years every 3 months. Still having day and nights sweats every day and night but the worst part is dealing with this by myself. I lost my husband a few years ago, and have a daughter and grandchildren but still, even with close friends, I am afraid of it coming back each and every time I have some new pain. Every time the 3 months are up and I have to take another treatment and blood tests, I pray that all will be well.

I have affirmations I say each and every day and pray a lot for strength to deal with whatever comes my way, but it can be very draining to fight feelings of helplessness and fear for so long. I am blessed that I can tolerate the Rituxan and that Medicare pays a small portion of the co-pays, but always worried that my co-pays will continue to go up and that my funds will be exhausted. The doctor says the 3 months treatments are forever or until cancer comes back or some other treatment becomes available. My family can’t help me financially, and I do feel so alone. I have a lot of good friends but since my husband passed away, everything weighs on me, taking care of the house, expenses, my health, etc.
I do thank my blessings every day, because I know that so many more have it worse than me, but I know fear too often and sometimes it’s very difficult to get on with life. Somehow I’ve managed and when I can get myself together I thank my blessings and just go on.

I guess we just can’t help but have the fear of cancer coming back in the back of our mind anytime something else appears, whatever that may be. Thank you for your thoughts, it gives me strength, and I am trying to live each and every day to the fullest but also try to accept that I will never be or feel the same ever again.

Sorry I rambled on. Best wishes to all of you and thank you.
– Posted by Vera 9/24/13 9:13 PM

thank you so much for your honest and detailed explanation of everything that I have been going through since I had my diagnosis of Lobular and Metastatic Breast Cancer, I am 5years 7 months post that awful day and even though I have put my trust in my Lord Jesus to heal me and keep me healthy that “omg i must have cancer again” feeling comes on a regular basis. I can relate to the sore this and that and thinking it is going to “happen again”. I can add to your reassurance by saying, “you are not in control of your life,,,God is and if you put your trust in him and ask him for peace…it does come.
– Posted by Kathleen Gilfillan 9/24/13 9:52 PM

Thank you so much for all your comments above. The last two days I’ve been having terrible back pain. On Sunday afternoon my friend was telling me all about her daughter’s double mastectomy and it’s aggressiveness. I’ve had the back pain a lot intermittently but not for a full 48 hours non-stop. Since a had a mastectomy in January 2011 and am 2 1/2 years into 5 year hormone therapy (Arimidex), I now entertain the possibility that maybe just talking about her daughter’s breast cancer affected me in such a way it felt like real, excruciating, never ending pain. I couldn’t get in any position of relief and OTC pain medication didn’t not help at all. Finally I took a stronger medicine and the next morning it was and has been just an aggravating pain that persists but is tolerable. I told my GP about it yesterday and will be having a back x-ray next month. Every comment helps, Thanks!
– Posted by Karen Franklin 9/25/13 6:56 AM

Thank you so much for capturing that recurrence feeling. It lurks and I try real hard to keep it at bay. My diagnosis gave me a different outlook on life, one which appreciates more, laughs more, loves more and tries not to sweat the small potatoes. I surround myself as much as possible with positive people. I try to live each day to the fullest and not look too far down the road because when I do look too far down the road, that’s when I have thoughts of what if. I am fortunate to have a wonderful husband and three sons. We have always been close but somehow this journey has brought us even closer. I was diagnosed December 18, 2012, Stage IIB, Her2 positive, mastectomy left side on Jan. 10 and finished chemo on June 4. I will finish Herceptin in mid February, and am currently taking Tamoxifen.
– Posted by Patricia Choukeir 9/25/13 8:08 AM

So glad to read this forum. I am almost 3 years past treatment for uterine cancer, and have experienced exactly what you describe with every physical symptom since my diagnosis. Even a minor canker sore has thrown me into anxiety mode, rushing to the dentist as I was sure I now had oral cancer somehow. I also identified with what you said about not being afraid to die so much as being afraid to not be available for your children. When I was diagnosed, my youngest daughter was not quite 15. I was convinced I would never see her graduate from high school. I remember rushing to help her get her drivers permit because, even though my husband would be there, I wanted to be the one to teach her to drive. Well she’s 18 now and applying to colleges, and while the fear still grabs me from time to time, it has lessened as I have seen her become more independent. I have often wondered if this is some sort of post traumatic stress, and didn’t realize how common these anxieties were. I really appreciated reading your post and all of the responses. Working hard to find joy in each day, while remaining vigilant.
– Posted by Kathy 9/25/13 8:21 AM

My first breast cancer was in 2000. I finished my treatments, chemo and radiation, just two days before my first grandchild was born.

18 months later, it recurred –a bilateral mastectomy, and years of oral chemo followed. Reconstructive surgery failed becuase of radiation from the first cancer treatment. The fear of recurrence never left.

Then, January 2012, I injured my neck and spine. Seven months of disabling pain later, it was determined that I had metastasized breast cancer of the bone. None of my other organs were involved, and the treatment is an anti-hormone shot monthly. I am in remission for 6 months now. My next Pet Scan is scheduled for October, and the fear is still there. My family knows this.

No amount of therapy or discussion has ever made the fear leave. My therapist tells me it is a form of Post Traumatic Stress Syndrome. And every memeberof the family will suffer from it at some level from my illness.

I have 6 grandchildren now, and intend, one way or another, to live to see them all grow up to adulthood.

Whenever anything is different, even a bug bite, I get nervous. My husband, daughters, sons-in-law and grandchildren are my rocks. They support and love me beyond my belief, and always keep me cheery in spite of the fear. Nothing will cheer you up from a slump like children doing zany things to make you laugh.

I thank God every day for being here, for my wonderful family, and pray for everyone, including myself, to help medicine find a way to stop the suffering from this nightmare.
– Posted by Ellen Auerbach 9/25/13 9:23 AM

I am a five year breast cancer survivor. It’s good to know that my recurrence fears are not neurotic. Each scan, each visit to the doctor is preceded by anxiety and a general inability to focus. At 68, perhaps I should be able to deal with this irrational fear. My children are grown and my dogs are provided for. I wasn’t fearful during the surgery, chemo and radiation. The hot flashes that come with Arimidex are but a small annoyance. But the fear is real.
– Posted by Mary Calabro 9/25/13 10:16 AM

Here’s something each of us should be prepared for in case we have to care for someone we love and we go to heaven at any moment. Prepare yourself and your loved ones so that you and them do not feel the hardships of what would I or they do if I’m not here to take care of things. My son can’t read my mind and I’m sure I would feel better if he had a guide on what I would like him to do. Simple questions? How? What? Where? When? Why?
One idea which is a quick way is a video from your cell phone. Just something to think about. My phone would probably run out of space, hahaha. You could have a video for one special person at a time and copy it to a disk if you don’t have a camcorder which I don’t have neither. First thing to do: 1. Write down the questions? 2. Then your answers. 3. Then record.
– Posted by Curious Caring Connie 9/25/13 11:21 AM

I am a seven-year breast cancer survivor, and I was actually relieved reading your blog. I read so many articles about survivors feeling like they have a new lease on life and living it to the fullest. And I DO feel grateful, extremely grateful to be here for my 20-year-old son. At the same time, I feel like it’s not just a matter of “if” I will have recurrence, but “when”. I have no real reason to feel this way, I just do. It was a relief to find out that I am not alone in my feelings. I think I will have to recruit some “stand-in” moms as well. I’m not even going to think about the stand-in wife thing!!
– Posted by Pat Zewiski 9/25/13 6:16 PM

This blog has brought me to tears; as an 8 year survivor of another form of ovarian cancer- the fear of the unknown consumes me sometimes. I constantly see myself checking my breasts, etc…for lumps…and I feel so alone sometimes. I don’t want people to think I am going crazy; it’s not just the fear of recurrence but the fear of not being able to live in peace.
I am definitely going to seek out a support group; as everytime I have pain anywhere, I go into a panic mode and start calling the oncology nurses, etc…
I truly learned a lot by reading this blog, and now I know that I am not alone nor going nuts.
– Posted by Rocio 9/26/13 7:18 AM

Thank you so much for this blog. I appreciate all the heart felt sharing of situations.
I was diagnosed with Stage 4, lung cancer (with metastatic spot on one rib)….Feb 2012. Since July 2012, it appears that I am in complete remission. Since Jan 2013, I have been having trouble breathing and had a PleurX catheter inserted in June which gets drained 3 times weekly. I get a lot of pleura pain. Physicians are not sure what is causing the pleura fluid….possibly result of cancer or radiation damage. My initial round of treatment involved daily radiation and weekly chemo. The steroids taken in conjunction with the chemo induced diabetes. I currently inject both short & long acting insulin.
I take each day as it comes. Since my chemo treatments are every 3 weeks, I do have 2 weeks when I feel pretty good. My energy level is not what it used to be…..I still get out of breath during activity even though the pleura fluid gets drained. When I feel good, I make the most of it.
I was granted permanent disability from my work in June 2013….working was becoming impossible with the pleura fluid and breathing problems, and other.
TO SHERAL JOHNSON & SUSAN DEEKE; I had a meningioma, benign brain tumor, the size of a golf ball. It was removed 20 years ago……no complications.
I am fortunate to have a wonderful support group of family and friends surrounding me. My fiance is so helpful and makes me laugh whenever he has the opportunity. I am constantly trying to make my affairs easy to take care of upon my death. That is my biggest concern.
I have the feeling that a complication rather than the cancer will take my life…..I have a port, a catheter, the diabetes. Sometimes it seems like my whole body is falling apart.
There is a metastatic support group that recently started up that I am joining…..planning to go to the next meeting.
Thank you again for this blog.
– Posted by Barbara Powell 9/26/13 12:37 PM

I began chemo for my triple negative breast cancer same day I signed up for medicare in 2005. As a mature BC participant I perhaps have been a bit more philosophical than some. I immediately had a mastectomy on the affected side, then VERY aggressive dense dose chemo followed by equally aggressive radiation. (During my chemo my mother died at a time when I could do nothing but go to my next chemo.) After a few months recuperation I had a second mastectomy on the non- involved side. After the pathology report indicated I no longer need it the chemo port came out. Thirteen days later my husband dropped dead (literally and totally unexpectedly.) What I have learned is that the only moment you can and do need to deal with is the one happening right now. The rest will play out as it plays out. Live every day, hour and even minute as though there will not necessarily be more. Plan and make arrangements for the inevitable, whenever it happens, and then LIVE until you don’t. We have been given a tangible warning of that-which perhaps makes us luckier(?) than the rest of the world.Each and every day is a good day until there are no more. Treasure them.
– Posted by Nancy Meyer 9/26/13 7:26 PM

I am a 2 and 1/2 year Breast cancer survivor. I am her2+. I too had herceptin for a year with chemo and radiation. 3 lumpectomys. 2 ports and still here to tell the story. God bless everyone who has this disease. I too feel pangs and what if’s. It is a very scary thing. thank you for sharing this blog. cookie roell (jeanne)
– Posted by Jeanne Roell 9/27/13 5:34 AM

I endured breast cancer treatment all of 2012 and into this year. I will be on Tamoxifen 4 more years. My 2 doctors said I am cancer free, I have my doubts. What do I say to people who say ” Are you cured?” or “You’re out of the woods, right? ” I don’t feel like I will ever be out of the woods. What is my response?
– Posted by connie pia 9/27/13 9:16 AM

It has been four years since my diagnosis of endometrial cancer. A full hysterectomy, removal of 26 lymph nodes, and 8 weeks of radiation all left me cancer free. I, however, fear recurrence at least six times of each and every day when I look to see if I have any spotting (the symptom that lead to diagnosis). I agree with the observation that I will never be the same again-cancer changes us…interesting correlation to PTSD, Ellen.
– Posted by Patty 9/27/13 2:18 PM

I’m on my third remission from cervical cancer, and my story emulates yours in many ways. Fear of dying and leaving my now 15-year-old daughter was core for me. I wrote her an extremely long letter when she turned 8 or 9 (it’s hard to remember now), about the things I wanted her to know, learn and celebrate in life. I also contacted friends and asked them to guide her if I passed. That along with a near-death experience helped me resolve my own death, too. Thank you for this beautiful story. It reminds me that I am not alone in my fears, my worries, and my struggle. Bless you!
– Posted by Marolan 9/27/13 4:03 PM

 

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