Yesterday I had an amazing conversation with a woman I had not met before. We were just two women in line at checkout counter when she noticed that I wear an arm compression sleeve on my left arm. She noticed it out loud and that led to a wonderful conversation in which we each talked about our positive experiences with breast cancer. She had not had IBC but had read about it, and her story is as positive as mine. She told me that she had been diagnosed with her type two different times and was told she would not see her young daughter’s 8th birthday. Her daughter is now in college, and Mary Miracle (I call her) is a vibrant and outgoing, positive thinking woman. I was so bouyed up from the friendly conversation! I went home smiling and thankful that I was a willing participant in a conversation with a stranger. I’ve come to the conclusion that none of us who have or are dealing with any type of breast cancer are really strangers. We have a common bond and perhaps a duty to reach out to each other and stress the positives in our lives. We’re not unlike combat veterans who, although they’ve never met, have a strong and common bond. They’ll help one another no matter what. They see all of themselves as friends. And so should we. While it’s sometimes necessary and cathartic to express the downside of our treatments or the anger and fear, I have always found it uplifting for me and the other persons to express my current situation, even when in I was in treatment, in positive ways and leave out the downside. It tended to make me more convinced that I really am/was fine and gave the other person hope. Is that wrong? No I don’t think so because no two people are going to react to chemo or any other treatment in the same way. It’s sad, I think, that sometimes medical personnel don’t recognize this and give prognosis that can be absolutely right for some and absolutely wrong for some. In my opinion it really comes down to the fact that we are all individuals with different immune systems, with different thoughts about recovery, with different reactions to the same drugs and with different ways of handling things. This is the main reason I would not let my Oncologist tell me anything he didn’t have to by law. I’m still so grateful that I didn’t know, at the beginning, there was a 5% survival rate for IBC at the time I was diagnosed. I know though, that I can’t be the only one with my positive outcome from that era. I’m just not that unique. Research is gaining on it and I know the survival rate will keep going up now that there IS research going on. I believe they will learn how to cure it as they do other types. Here’s the link for the research foundation again: www.ibcresearch.org/ Information abounds there now. It wasn’t available when I went through it, but it’s there for you. When I was doing research for this blog, I contacted them through the website, told my positive story, and a few days later a volunteer who had experience with IBC herself, emailed me back. This is a program they offer as support to women with this diagnosis….so if you need someone to express to or ask questions of, I urge you to contact them by email through the website. I also hope you’ll open up to others if it comes up, and refuse to keep it bottled up inside. You have done nothing wrong to deserve IBC. No matter how much the media play stories about what’s bad for you, we are still absolutely individuals and next month they’ll change their minds again anyway. We all know smoking and drinking are bad for us and yet we still hear the odd story about the 90+ person who has had cigarettes and whiskey every day of their lives. I’m not advocating going wild, but to remember that you know your own body better than anyone else and you are in charge of moderation in all things. You know what things make you feel healthy and what things don’t. In the end, it’s all about personal responsibility……what a bummer, huh? Some days I just don’t feel like being responsible……and then the next day I change my mind, so hopefully it evens out. I know that you’re special and wonderful and hope you have wonderful conversations with all of our sisters of this dis-ease. Ciao for now.
A piece of my artwork. Finally figured out how to get this uploaded. She’s a happy camper my Spirit of (17) ’76! copyright owned by Lea Wagner/Artist. I hope she makes you smile!!!!
It came to me today that surviving IBC is a bit like our Country’s struggle for independence. It took time, endurance and the willingness to believe that we would prevail in that struggle. And look what happened!!!! We’re celebrating over 230 years of independence today! Do we still struggle with ongoing issues the Revolutionary War gave us the ability to create or were created from that same independence? YES, of course. And like our country surviving the Revolution, women who survive IBC may find themselves with other ongoing issues to deal with after recovery. I believe they will also certainly become changed in fundamental and beneficial ways. Many who have survived all types of cancers surprise others by saying “It was the best time of my life”. Sounds pretty crazy huh? Well, I feel the same way because when I actually survived something that could take my life, I began to see my life more clearly, I am continuing to make positive changes and I acknowledged just how valuable the journey of my life really is. It’s definitely a hard wake up call and it’s up to each one of us to take a deep look into what we actually believe and where we want to go with our lives when we’re no longer consumed with surviving the cancer. It’s a natural progression, in my opinion, to take stock and make changes that support ourselves in making our lives what we really want them to be once we have faced possible death. Gratitude is a really fine place to start I think. Today I’m grateful our forefathers worked to make their vision for this country’s future become a reality. No matter how I feel about our present political climate or any reports about how awful things are, this remains the only country in the world I want to be my home. I’m grateful we have so many freedoms-including the freedom to make our lives good or bad-that don’t exist in many other places on earth. Personal responsibility is at the base of our experience of our freedoms, including decisions about surviving IBC. However it turns out, it will have been our decision, conscious or not, as to the outcome. These are decisions no one else can make for us, even though it may appear that way, and I believe that looking at what we truly believe about ourselves, deep down, is important to that process no matter how scared we are to do it. I routinely gave thanks that I had the most skilled, dedicated and wonderful medical personnel on my team before I even knew who they were. I also knew that it was my personal responsibility and totally OK to make myself the center of this process without considering anyone else and be reponsible for the decisions about treatments while weighing in the opinions of my team. I felt my life was too important to give it over to anyone and blindly go along. I knew already that I have an amazingly creative mind (I’m a professional artist). Give me a thought and it can take root and come true for me in a very short time – very scary when it’s life or death. So I asked my Oncologist not to tell me anything about the cancer, my “stage”, or prognosis unless he was bound by law to do so. I have no doubt that had I been told there was a 5% survival rate at that time, I would have obsessed over it until I died. Not knowing meant I could freely believe in whatever I wanted, including a complete recovery. I’m here and cancer free after 9 years. This was my way of handling IBC. I’m advocating that you discover your own process to support your recovery possibilities. In the meantime giving up fear and finding ways, big and small, to make the journey as easy as is possible is a productive way of using your time. You’re amazing and so worthwhile!
Spring was a challenge for me this year, but the best one has been that I’ve been able to garden in such a way that it’s major exercise for me (hand pruning trees, etc), and I feel better than I have for years . I have a large yard, and when I looked at it after winter I saw that the trees and plants were completely overgrown. After my divorce my stress levels went down, down, down – a good thing since I deal with chemotherapy induced diabetes — but it did mean that I or someone else had to do the yard work because plants just keep growing! Most of the time I have aches and pains afterward, but the next day and week I feel wonderful! When I finally get everything pruned back and in order I’m sure it will taper off a bit, but the exercise has lowered my blood sugar levels and cleared my brain and all those other things we hear about but often pass by in favor of sitting in a chair. Make no mistake, I don’t garden all day….I’m heat sensitive in an area of California where the tempertures often hit 100+ degrees in the summer, so I start at 6 AM or 7AM on Saturdays and work until it gets hot, around 10AM or 11AM. And for all you “not a morning person” people out there….neither am I, so I rest when I’m finished gardening (naps are good things too!!). It must be true that oxygen to the brain is good for us, because I’m sure that’s why I’m able to get up and go. I also work a full time job, so the gardening is confined to weekends. When I was dealing with IBC I was given an anti-nasuea drug that really pepped me up, so even though I was working a full time job I rolled out of bed at 5:30AM, hitched the dogs up to their leashes and we went for a 10 min walk/jog — dogs can quickly make you feel really guilty if you don’t go out on those walks once you start them, and walks don’t have to be for long distances to make you feel better. I am NOT a runner or jogger, so doing that was amazing to me, and I remember feeling much better on those days than on the days I decided not to go. Before I go to bed now I also get on my eliptical exerciser and do about 6 minutes….not a lot, but it also has the effect of lowering my sugar levels and making my doctor happy. Isn’t it just disgusting to find out that exercise really is a key element to better health?!! I wasn’t brought up in a household that taught us to exercise, so after I got out of high school (in California 4 years of Phys Ed was mandatory to graduate then) I avoided it like the plague unless it was something so fun I didn’t think I was exercising (like dancing or swimming). Now that I’m “mature” I am happy to find such a simple thing really can prolong life…..so I’ll keep doing it because I intend to follow my 92 year old (and still going strong) mother into my own 90′s some day. I hope you’ll find something that exercises you and makes you feel good — and that you’ll love to keep doing. Dancing is very good exercise with or without a partner, of course so is swimming. If it’s something that makes you smile…go for it! Smiling and laughing are healers! You’re a wonder, and you deserve to feel great!
After I was diagnosed with IBC, I wasn’t going to tell anyone that I was dealing with the dreaded “c” word, and when I told my boss who is also my friend, her reaction was to tell me that if I kept it to myself I might deflect any negative thoughts from others but I’d also miss out on all of the positive support I could have. Boy was she right! I never heard one negative remark about the possibility of my recovery in the 8 months I did my treatments and perfect strangers came in to check on me in the small town where I worked as well! The love I felt from everyone was amazing and my friends and acquaintances turned out to be the most important resource in my IBC recovery. I didn’t need anyone to drive me to treatment, but my friends quietly took me places I might not have gone by myself: A commercial garden of exquisite daylilies (I do so love gardens and flowers), a movie, a drive in the country, an Art show. And always with the caveat of “Tell me if you need to go home and I’ll take you immediately” (and they did). I received a constant message of “you matter to me”—so important, in my opinion, to recovery. One of my closest friends just kept showing up with love, and she was with me all the way to the surgical doors when I went for my double mastectomy. She knows who she is, and right now she’s doing the same for another friend of hers. What a wonderful gift she is!
I’m not a person who asks for anything for myself easily. That’s probably the lesson I was supposed to learn….not only to ask for what I wanted but to realize that my friends felt helpless to cure me, so they had a need to do something for me. They wanted to help and in letting them in, my life was so enriched. I am so grateful for that lesson, because had I turned down the offers, I would have been diminishing them as well as myself. I hope you are looking outward, appreciating your friends and graciously accepting their support. They love you! And you are so worth it!
I’d like to share with you a really great catalog with affordable products for breast cancer patients. tlcdirect.org I use it all the time. It has wonderful wigs, hats, scarves, mastectomy products as well as prosthesis. I have had a double mastectomy so I can get away with really light weight breast forms (and I do), but they have others as well. My understanding is that if you have only a single mastectomy you will need more weight in the form. They also have great tank tops, lace camisoles and bras. I use the tanks in summer here and the camisoles under my fashions (although you could wear the tank underneath also). The catalog is free (you can order online) and your Oncologist may even have some…..that’s where I first saw it. It can be so difficult to find these products (especially locally) at affordable prices that I thought you’d want to know about this.
The American Cancer Society Relay for Life events are beginning here where I live. The first time I went to one I didn’t know if I wanted to be there, but something inside me said to go–so I did. I don’t join the relay teams, but I always walk the Survivor’s Lap. I think I’ve only missed one since 2002. Why? Well, because I walked that first lap with so many others and people stood on the sidelines clapped and cheered and made me ( and all of us) feel that I had done something wonderful. I was brought to tears because up until then I felt I had only done what I had to do and no one had ever acknowledged how amazing recovery is. Until then no one had acknowledged that this was a BIG DEAL for everyone in that lap. I was so uplifted! They also gave me a medal to hang around my neck (which hangs on my computer at work, where I see it every day) as well as a T shirt. No one had ever given me gifts just for being me! There was also a big white cloth to print my hand on and write the length of time I had survived. Imagine my surprise, when I wrote the dates) to discover that I wasn’t a couple of years out, but just 8 months! For me, just the fact of being well and living my daily life had been enough. I love writing the dates on that cloth now……it’s been 9 years! I hope that when you get the chance to walk in this event you’ll do it. I met some amazing people while waiting to start, and there aren’t any big, bad rules…..had I known how uplifting it would be, before I finished treatment, I would have done it–because as long as I’m there I’m surviving, right? So if you get the urge to walk with the others and experience the crowd cheering you on even if you’re still in treatment….do it! That way you can feel what it will be like after you are completely recovered too. A good image to have in your mind!
There are a ton of books on the subject of cancer out there now, and the only two I read (remember this was 9 years ago) and found most uplifting were “Love, Medicine and Miracles” written by Oncologist Bernie Seigel about studies that have been done about the real effects of a positive mindset on recovery from cancer and “It’s Not About the Bike” (his first book) by Lance Armstrong which chronicles his experience with cancer from onset to racing again. Not always easy to read, but when I read what he went through and could see him actually racing again, it made a big impact and gave me hope. You can probably find them on Amazon.com I hope you’ll take a look at them. There are now many more books out there to read and I hope you’ll find some that speak to you and uplift you also. Please share the titles here if you think they will help others. I have to admit that my personal philosophy is to trust in the team I have chosen for treatment, and focus only on the positive. I’ve started a book and in subsequent posts will put up chapters for your reveiw. PLEASE REMEMBER: THIS BLOG IS NOT MEANT TO BE MEDICAL ADVICE, NOR IS IT TO TAKE THE PLACE OF YOUR MEDICAL PROFESSIONALS. MY EXPERIENCE IS JUST THAT…MY EXPERIENCE. YOU ALL HAVE YOUR OWN WAYS OF BEING AND I URGE YOU TO GET TO KNOW YOURSELF IN ORDER TO HAVE THE BEST EXPERIENCE YOU CAN. I and others who comment wish the best for you but only you know what that is. Our sharing is simply to give you strength to persevere.
I’m excited to finally be working with this blog again. There is so much more information available than when I dealt with IBC 9 years ago. My email address just for this subject is firstname.lastname@example.org and a really great link for a wealth of information is www.ibcresearch.org/ I’m so passionate about this subject because I now understand how amazing it is that I am even alive, let alone thriving! I wish that blessing for all who come into contact with this deadly condition. Spring is here, in Northern California, even if the weather is cold and wet for now. I realize cold and wet here is very different from snow and flood where some of you live, but whatever your situation I hope for the best for all of you!