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Trying to Find Myself Again

Part 4: Treatments are over except for medication for five years.

I was diagnosed with breast cancer in March 2010 and by July 2010 I had completed my lumpectomy surgery and radiation treatments.

I have heard that after radiation, some women pick up their routines as if nothing happened. I tried to do this, too, but it took me awhile before I could get back into my old routines. It was hard hearing people tell me that friends “breezed through” radiation. One friend told me that she only wanted people to “think” that she had breezed through it and that made me feel better.

For me post-radiation was difficult. I had a radiation side effect, radiation pneumonitis. Neither the radiation oncologist nor my primary care doctor agreed with my self-diagnosis, but I was sure of it.

Loss of Breath

Radiation pneumonitis is an inflammation of the lungs caused by radiation of the breast that for me caused shortness of breath. Brisk walking, bike riding, swimming and even talking were all difficult since I couldn’t seem to catch my breath. After even light exercise, I was embarrassed to find myself huffing and puffing.

I had just retired from my teaching career, so I had plenty of time to rest and that’s what I did. After awhile the shortness of breath subsided. My energy, however, was much slower to return.

My husband continued to postpone our retirement celebratory two-week trip to Egypt because he felt I hadn’t regained enough of my strength back. By the time he deemed me fit enough to withstand the vigor of the trip in which I wanted to see and do everything, it was January and the tour was full, so I would have to wait until March.

How ironic! Had we been able to book Egypt in January, we would have been celebrating being finished with cancer and retirement when the riots broke out!

The trip we did book, for March, which as you may suspect was canceled.

We were both disappointed knowing that the trip would have been beneficial for both of us. The escape to such an exotic location would have done wonders in erasing our year of cancer.

Yes, I did mean "our." My husband didn't have cancer but it was definitely his year of cancer too.

It took us awhile, but we did book another trip.

Last Step of Recovery 

The last step of my cancer recovery was the start of a medication that I would be taking for the next five years, Arimidex.  My doctor recommended that we buy the pills in bulk by mail. We did and saved quite a bit!

After starting the medication, all that was left for me to do was to count down the days to my next mammogram, in March 2011 to see if the cancer recurred.

If a breast cancer was to return it is most likely to return in the first three to five years. As the years go by, recurrence becomes less likely.

There are statistics on-line that explain percentages of breast cancer recurrences if you follow this course of treatment or that treatment or if you elect to not follow any after surgery treatment at all. With treatments your chance of recurrence goes down.

By having the radiation and taking the Arimidex for five years my likelihood of breast cancer recurrence is very low but still my chances of having a cancer recurrence is still higher than  someone who has never had cancer, developing breast cancer.

One of the many descriptors of my cancer was “estrogen positive” which is a good thing. This type of cancer grows more rapidly with estrogen; therefore by reducing the amount of estrogen in my body reduces cancer cell growth.

This medication has been explained to me many times, but I am not confident that I understand it completely or accurately. I know Arimidex is an aromatase inhibitor. Somehow the Arimidex interferes with the production of estrogen. If there are any cancer cells still existing in my breasts, the Arimidex blocks the estrogen that the cancer needs to thrive.

Another more common treatment is with the drug Tamoxifin. I am not all that familiar with it but I think it does the same thing as Arimidex but with different side effects but again it is used long term.

During menopause, the amount of estrogen produced is diminished, consequently causing many unpleasant side effects, like hot flashes and mood swings. In the postmenopausal woman like me, Arimidex reduces the estrogen even further causing the menopausal symptoms to return.

Feeling Guilty

The benefits of Arimidex for me far outweigh the long list of side effects for Armidex.  The worst side effect for me has been the up and down mood swings. I recognize when I am on a downward spiral and try hard to involve myself in something to break out of it. It's tough.

In addition to my mood swings, I have experienced a few very painful arthritis flare-ups as well.  Since estrogen lubricates joints, having a diminished amount of estrogen can produce very sore joints.

Of course, when my joints first began to ache, I thought for sure I had bone cancer. Yes, if I have a stomachache, I think I must have stomach cancer. I think I have brain cancer if my headaches. But in spite of that bit of paranoia, I consider myself to be doing fine.

An overwhelming feeling I have had during my year of recovery has been that of guilt. Crazy, I know, but I feel guilty that I didn’t need to have chemotherapy. I don’t feel I deserve the title cancer survivor.

Somehow I feel like I didn’t really have serious enough cancer. My journey wasn’t nearly bad compared to so many women so I try to stop myself when I start to complain. I feel as though I didn’t suffer enough.

We were “scammed” once. I don’t know how this woman had all of my information but a lovely woman called asking me how I was. We chatted and I donated to something called Breast Cancer Research. While completing our taxes, my husband found that there was no such organization.

Breaking Out of Cancer Cocoon

Finally in March, one year after my cancer diagnosis, I received a bill of clean health. My mammograms were clear so I am now considering myself to be a “cancer survivor.”

Having those mammograms, for me was traumatic. I am having my next 4 years of mammograms at Mass General but I must say I am missing the Sturdy mammography ladies.  The mammography-imaging department there is very large and a bit impersonal.

During the mammograms, my anxiety was high. I had to sit down with my head between my legs several times. Anxiety is hard to explain. I wasn’t in pain or fearful. It’s worse than that. Uncontrollable tears just spill out. It’s overwhelming and quite embarrassing, especially for someone who does not want to show her emotions. Needless to say I was relieved when it was done and we were heading down Route 93 back to Attleboro.

The clear mammograms should have brought me normalcy yet it didn’t. I am still not completely “over it.” During my appointment with my oncologist I told her about my mood swings and the feelings of anxiety I experienced during my hot flashes. She suggested, for the second time, that I see her colleague, an oncology psychiatrist.

I have to say; I should have gone to see the oncology psychiatrist right from the beginning! She was great!  She validated all of my feelings and has started me on some medications to alleviate my emotional self, balancing the estrogen reduction side effects of the Arimidex. I am feeling much better.

For the next four years, I still have quite a few doctors’ appointments. Every six months I see the oncologist or the oncologist practitioner. I am seeing the oncology psychiatrist in a month but she will probably be yearly once my medications are adjusted. I also see my primary care doctor twice yearly and the radiologist yearly.

I am a different person now that year has passed. I am extremely and forever grateful to my husband, daughter and son who were always understanding of my ups and downs and supportive throughout.

There is no longer need for my cocoon of denial. I am looking forward to the day when I can say, “I’m done with cancer!”

 Yet just as the woman who told me that she wanted people to “think” that she “breezed through” radiation treatments, I want people to “think” I am over and done with cancer. I’m not sure I will ever feel “over it.”

Editor's Note: Thank you Melissa Riley for sharing your story of shock, suffering and survival. 

 

 

 

joanne June 05, 2011 at 09:37 PM
I started with Tamoxifen and then was switched to Arimidex. My total time taking them is now 4 yrs, 3 months. A year or so ago, my oncologist told me he is probably going to have me take them a total of 10 years instead of the five we started out thinking. I've had no recurrence, so I guess it must be some new studies indicating I should have some benefit in continuing beyond the first five years.
Kimarene June 05, 2011 at 10:26 PM
Thank you for your story. I have made a similar journey (lumpectomy, radiation, Arimidex). I can totally relate to your breakdown during your follow-up mammograms. It has been only in last year that I was able to go through that without crying. Very embarrassing! I don't think the fear of recurrence ever completely goes away, but I think about it less than I used to. I wish you continued good health!
Mary Beth Windberg June 05, 2011 at 10:37 PM
I can't believe this wasn't written by me - I was just diagnosed this past march, and am currently udnergoing radiation, scheduled to be complete in July. I have the same guilty feelings, like I shouldn't put myself in the same category as others with breast cancer. And I feel like I have to minimize my experience becuase I don't have it so bad. Your article has helped me gain some insight. Thank you!
Roxanne Houghton June 06, 2011 at 01:36 AM
Milissa: Dont feel guilty about any of your feelings. You are a good person and deserve to be a cancer survivor. How brave you and the other women that have commented here, are. Good luck to all of you and God bless!
Kate Hibbert June 06, 2011 at 09:50 AM
Thank you for telling your story. I, too, am a cancer survivor, albeit ovarian cancer. I was diagnosed at age 41 when my daughter was about to turn four. In fact, I remember writing her birthday party invitations in the chemo unit. Yes, I had chemo - 6 rounds of Taxol and Carboplatin over the course of 6 months. Cancer is a difficult journey for a family to take. Your experience is YOUR experience - there is no right or wrong way to go through it. I am sure that every cancer patient is frightened - I know I was. The years immediately following treatment were hard as my husband and I struggled to deal with our new normal. Seven years later I am healthy, we are happy, and I am even relaxed when I go for my checkups . I wish you luck, and please know that you story is inspiring because you speak from your heart, without the platitudes cancer patient so often hear. I wish the best to you and your family.
Terry Tower June 06, 2011 at 11:59 AM
Hi Missy! Thanks for sharing. It took courage, but that's something that you have never lacked. Your story is inspirational & more so to those who know you personally. I wish you all, the very best!!!!!!
Maureen Nolan-Whitty June 06, 2011 at 12:35 PM
Missy You did fabulous on the 4 parts of your story. As you already know...I surely can relate. I should have spoken up and most likely could have released alot of my anxieties I kept inside. But then again..it was back in 1995 and 1997 when it came back..and very few were DX. with breast cancer that I knew of at my age.. Will say..I surely can relate to your post radiation...even to this day..I still have the side effects. But having a positive attitude/outlook does help, keeping busy as well. I don't recommend ANYONE to go through this ....ALONE. Don't be ..like I was..swallow your pride and speak and tell like it is...we all go through different paths...but each story can help all of us. Believe I was the one...that told people..I was proud (should say..thought/and was in denial) that I breezed through...no I did not. In fact..it changed my whole life...into a differ path, that I would have chosen differently had I spoke up and asked for help.. Even todays, I still have to work on it..reaching out/sharing my feelings. I give you a lot of credit..Missy... you have inspired me, believe it. Let's keep in touch. Thanks..MJ
Jacqueline L. Romaniecki June 06, 2011 at 01:28 PM
Missy Thank you so for sharing your story...I am sure you have helped many people by do so. Thoughts and prayers for continued good days/years for you Bill and the whole family
Melissa Riley June 06, 2011 at 06:24 PM
OMG!!!! I am struggling with horrific joint pain and some pretty crazy cognitive symptoms. I can NOT imagine being on Arimidex for 5 more years. Of course, I would BUT one year was more than enough for me. I am so glad you are doing well. Please take care of yourself! Thank you, too for posting, everyone needs to know that they must get their mammograms and follow the doctor's orders!!
Melissa Riley June 06, 2011 at 06:28 PM
Thank you for crying!!!! I thought I was the only one not able to hold it together. Yes, your journey is exactly like mine and I am SO SORRY that you had to go through it. IT WAS VERY HARD and unless you went through it, you don't really understand how hard. AND the fear of recurrence.....I hope to overcome that, but exactly how, I don't know. Thank you so much for posting, you have made me feel better by validating my crying. Please take care and I wish you, too good health!
Melissa Riley June 06, 2011 at 06:36 PM
Thank you for posting, Mary Beth, Yes, we are the same. I'm sorry to say that after the radiation, for me it wasn't and isn't over. I didn't realize it but I was depressed for a year after treatment. Only when I took an anti-anxiety pill did I realize how much more energetic and enthusiastic I was! Taking the Arimidex was part of it but my primary care doctor says I still have cancer in my subconscious which is distracting me causing insomnia, memory problems, inability to organize myself and my thoughts, and mispronunciation of words. In addition I have horrific joint pain and my blood pressure shot up! Make sure you ask for a sedative if you think you need one. I'm assuming you will be on medications for 5 years? The medication made me crazy! I'm hoping you won't have the side effects that I had, but look out for them! Take Care and Good Luck!
Melissa Riley June 06, 2011 at 06:39 PM
TY Roxanne. I was just SO stupid going into it. I didn't know ANYTHING and I'm ashamed about that ignorance. I worried and worried about writing this series, but my husband, Bill thought it was a very good exercise for me in my attempt to put this cancer aside. As it turns out writing the articles didn't help BUT the responses I have received have! I have received so much validation for my feelings, I feel stronger. Cancer is very lonely. Maybe doctors should assign victims a mentor for validation and support. TY Roxanne again, your post makes me feel better. :)
Melissa Riley June 06, 2011 at 06:44 PM
Thank you so much, Kate. You didn't say it but I'm betting your daughter was inspirational for you in your fight against cancer. When I'm complaining of this cancer side effect or that one, I AM very guilty as MY cancer was NOTHING compared to yours. You must have been very strong to make it through! CONGRATULATIONS on 7 years!! A friend of mine also went through something similar last March. She is not yet ready to talk about it. Like you said everyone's experience is different. Thank You for sharing. Stay well!
Melissa Riley June 06, 2011 at 06:44 PM
I LOVE YOU TERRY!!!
Melissa Riley June 06, 2011 at 06:48 PM
TY, MJ. It is a long journey. You may not have shared all of your insights at the time but you have been a rock of support for me now! Again YOU inspired me because your cancer was SO much more severe than mine. I agree we are sisters in cancer and should we all should share our stories with each other. Be Well! :)
Melissa Riley June 06, 2011 at 06:51 PM
TY Jackie! I hope I have helped others. I know others have helped me by commenting, sharing and validating my feelings. I truly felt at many points that I was alone. But with an anti-anxiety medication life is much brighter! My energy and enthusiasm have thankfully returned! Best wishes for good health and happiness to your family, as well I'm hoping Matt and Eric are doing well! :)
Marianne O'Boyle June 07, 2011 at 02:04 AM
Hi Missy, Great article!! I know what you mean about your cancer not being"bad enough." There are so many other women who have gone through much worse experiences than I have, but it is still very unsettling, disruptive and scary. I think we do deserve the term Survivor! I tried both Tamoxifen (9 years ago) and Arimidex (after my surgery in October) and couldn't tolerate either one. I'm glad you can hang in there with the help of the other meds. You mentioned the need for a mentor. Do you know about the Breast Cancer Network of Strength? It is a 24/7 Breast Cancer Support Center. You can call at any time and speak to a breast cancer survivor. I was able to talk to someone who had the same type of radiation I was considering. There is a toll free number, 800-221-2141 and a website, www.networkofstrength.org. Best wishes to you and the rest of the family and may all your future mammograms be uneventful!!!!
Melissa Riley June 07, 2011 at 03:45 PM
TY for your information!! I have written them down and will use them myself OR have them ready for the next person I see who needs them. I am VERY glad to hear of someone else who couldn't tolerate Arimidex. It makes me feel less wimp-ish!!!!! I think all of us sisters need to know there are others JUST LIKE US and we shouldn't be thinking we are whining or are alone! I have learned so much through all of this. My primary doctor told me that I have been through a life altering event and it will take time for my mind and body to recover. I thought I would be all done upon completing the radiation!!! Thank you for posting and may all YOUR future mammograms be uneventful as well!!! :)
N-Hardy June 10, 2011 at 11:14 PM
Thank you for sharing. Mom always get her annual mammogram done 1 month before her oncologist appointment. Mom worries if will bring bad news & have to wait a month to hear the results. I tell her, if it is bad news they would call within a week. I worried for 2 years about her bone density because of the Arimidex. She has a base line test 3 years ago. Last June, I asked for a script to have the bone density test. The results came back fine, according to her primary doctor, oncologist & orthopedic surgeon. I guess the extra calcium gel cap & vitamin D worked. So far Mom has had no other side effects from the Aromatase inhibitor. Mom had a lumpectomy, brachytherapy & whole breast radiation. And then the oncologist said she may have to have chemo after all. They ran an Oncotype DX test on her tumor to decide if chemo would be needed. Her number was 17. 1-16 was a low risk. He did not recommend chemo to go from a 21% to 18% reccurrence chance. I'm excited that the price of anastroloze dropped to $30 for 90 days. Wow, all the news of this year about aromatase inhibitors to shrink breast cancer tumors & to maybe prevent breast cancer! Now to get Mom back swimming to strenghten her bones. She has had 2 knee replacements & 1 last hip replacement in 18 months. She put it off for 5 years until she could not take the pain no more. And last June she developed basal skin cancer. Every couple months they cut out another section of skin.
Melissa Riley June 13, 2011 at 12:37 AM
OMG, bless your mother! She and YOU, too certainly have gone through a lot! It's amazing the stuff you learn while on this journey! Yes, I am looking forward to the new aromatase medicines. I am tolerating Arimidex so far, not all that well, but I can manage. Next month I will have been on it for a year and will be having my joints and bones looked at for possible deterioration. My joint pain ebbs and flows. When it's bad it's brutal. My prayers are with you and your mother. I can't fathom what she has gone through.
Mary Taylor June 21, 2011 at 10:20 PM
Dear Melissa, I was diagnosed Nov 04. Two lumpectomies, chemo, radiation, Herceptin infusions for 1-1/2 years, etc. Yet, similiar to many of your feelings, I felt "guilty" that my cancer was not as bad as others. I would be at infusion and see other cancer patients who were truly struggling. I thought about single parents with cancer or widows/widowers who live alone. Have you found that you are a magnet now for anyone who has breast cancer or in their families?; they reach out to you for advice. The most important thing I emphasize is that "no two people will have the same experience", i.e., oh it was a breeze or I continued working through my chemo or you'll be back on your feet in no time. Kate had it right. Like childbirth; everyone is different and you cannot use other people's tolerance of pain, situation, or their feelings as a barometer for your cancer diagnosis and experience. Our bodies (and minds) fought a war and during that war, you needed every bit of strength to fight. Yet we struggle with thoughts of am I being a weenie? does this happen to everyone? she had breast cancer and still did everything, what's wrong with me? Even now - more than 5 years later - I think back on the guilt I felt by being out of work for a year. stupid. Regaining my physical strength was one journey, but "finding myself" again took a lot longer via therapy. So many of us share similar stories and I still receive strength from them. Thank you for sharing yours. xo
Melissa Riley June 22, 2011 at 12:40 PM
Thank you for posting, Mary. I am so sorry about all that you had to go through. My editor asked me to write one last artilce about the resposnes the articles that I have received. I did write about people needed varying amounts of time to "recover," but not as well as you just did. Please comment on my next article! You reinforce what many need to know! How similar our stories are. Many of the respondents said, too, that even after years have gone by the stories are still sustaining them. Thank YOU for sharing yours. Again I felt guilty seeing how much more difficult your cancer was than mine but now I am trying to turn that guilt around. Maybe the guilt we feel should inspire us to work harder at educationing our families, friends and everyone else that we can in the name of those ladies who suffer the most. Please take care of yourself, xoxox
N-Hardy August 08, 2011 at 08:10 PM
I found this and it looks promising. http://news.wustl.edu/news/Pages/22523.aspx
Melissa Riley August 11, 2011 at 09:10 PM
TY N-Hardy! I loved that the article pointed out that the people who suffered the most side effects were least likely to have a cancer recurrence. I will ask my doctor about the vitamin E! TY :)

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