November 9 – I shall do a lot of rambling in this update as I think of things from the past year. 2003 and 2004 have not been my best years, I will not be sorry to see them end.
I was thinking about fatigue this morning as I walked my mile and a half. I am really tired when I am done but able to go on about my business with no need to rest after the walk. I still don’t feel 100% more like 85% in getting my strength back but I have read that it can take up to two years so am not worrying about it, just getting a little stronger each day. I do still tire easily and sometimes I get really exhausted and the difference between regular tired and this tired is that it is a numbing tiredness. It does go away if I rest so…………..I rest! That is also a warning that I am pushing too hard so I try to heed that, too.
Aside from still being tired to some degree, the only physical thing I feel is different is my sense of balance. When I am taking my walk sometimes I have to concentrate on walking straight and if I lose my balance I cannot seem to judge properly just how to catch my balance, it is like I am slightly “off” from what I need to stop my fall. I did fall off the ladder last week when I was painting the bathroom and landed in the Jacuzzi sideways with my head and legs up at the rim and my hips and butt down in the tub! Still had the paintbrush and paint container in my hands when I landed! I miss-stepped and I could feel myself losing my balance but couldn’t figure out how to stop it. Harold had to come and haul me out of there – I looked like a pretzel! Only ended up with a big bruise on the front of my leg where I hit the side of the tub first. Don’t think that I fall all the time because I don’t, just describing an odd feeling.
Mentally, I sometimes have trouble following my thought pattern and focusing, it is like things gets a bit “fuzzy.” Sometimes feel like I “zone out” for a bit, but for the most part I feel pretty “normal.” Still going to therapy, my poor brain really got zapped with all that has happened and I still am fighting depression. No surprise from what I have read.
You know what? If none of the above ever changes, never improves at all.………. so what! I am here and I have a very good quality of life with LIFE being the key word here!
What do I look like after all the surgeries and reconstruction? In clothing, pretty much like any other fifty-seven year old but with perkier boobs! You can still see the scars on either side of the areolas, still a bit red but that should fade more over time, and the areolas are smooth and shiny instead of matte and bumpy. The coloring as it is now is enough for me without any tattooing. Nice color separation without being too dark to go braless. Nipples are lighter looking than before and smooth. Have some skin on the inside edge of each boob that looks a bit empty but if the twins would get harnessed in a bra it would fill in those areas! Of course, that is not an option – I will be braless forever!
Am I sore? If I lay more on my stomach on my left side with my arm up, I have a “hitch” in the morning like scar tissue that was stretched. Probably just exactly what it is! That is the side where the cancer was and so there was more surgery and the lymph node removal was on that side, too. Sometimes the left side of my left breast is a bit sore but the surgeon said to just wait, that there was lot done there and it will just take time to heal all the way. I have an itch between the twins that no one can identify and my scar on Tania the Tummy still itches a lot!
How do the twins feel as breast replacements? They bounce just the slightest bit when I walk (like having a comfortable bra on if there is such a thing!), and feel normal on my chest except when I bump into something or brush up against something – there is no feeling only the sensation of pressure on my chest. I could be being Sexy Sue and not even know it! No feeling of gravity exerting force on my fake ones as it was with my real ones. And……….my real ones always were tender and would be a bit sore if I went braless, from gravity (remember I was large busted), so the plus side is that I don’t hurt anymore and that is a very big plus indeed! To touch them they feel quite normal, soft and pliable so far. I understand it is possible that over time scar tissue may form making the area around the implants hard and then they would have to be replaced but so far so good. I do have a lifetime warranty on the implants you know! Nipples have shrunk down a little so am not quite so “Frog eyed” or as Harold would say “so very happy to see everyone!” All in all a good trade-off. It is obvious I had breast and nipple reconstruction, no one would ever mistake it for anything else. Not what you would get with a “boob job” mind you, but under the circumstances, I am pleased with the results.
At this point, the thing that bothers me the most about the whole journey is having the chemo kickstart the diabetes! I could really have done nicely without that complication! Breast cancer treatment had and end to it; diabetes is in your face every day for the rest of your life!
What have I learned? To slow down, to not work so hard, to enjoy my life, to say “No” to things I don’t want to do (well, that one still needs a bit more work but I am getting better!), and to say “Yes!” to the things I really want to do, to enjoy my family and friends more, to get outside more especially on nice days, to really enjoy the home Harold and I have created, and Debbie, my therapist, says she is going to teach me how to “play” again, that I seem to have lost that ability along the road somewhere. I’d say that breast cancer taught me a lot about life and living. Mind you, I am not recommending it as a learning resource! But, since I had it anyway I’m glad to have learned some very positive things from it. I have a long way to go to get to the place I really want to be, but I feel I am on the right track now.
Am I afraid for the future? Yes, but I hear that the longer you have great check-ups the less you think about it, but that it is always in the back of your mind, lurking. A woman just wrote to me today who is a thirty year survivor! Loved hearing that!
If it came back, would I have chemo again? Yes, I would not be happy but I would do it. I would know what to expect and I AM a survivor! I would dust off my wigs and invite Brenda Braveheart back!
A great new feature has been added by Marian Jackson, my webmaster and also the wonderful woman who created the BC Journals website for me to house the journals and all the other info. It is a “Search” box so if someone just wants to know about chemo they type that in and all the journals and areas that mention it come up. Whatever word they type in there will take them to the correct pages so if a person does not want to read all of them they can be selective. Neat, huh!
I am reading two books right now that I would like to recommend. Therapist Debbie asked me to read Secrets, Lies, Betrayals by Maggie Scarf (if you have some dark areas in your past childhood) and daughter Jaime gave me Simple Abundance: A Daybook of Comfort and Joy by Sarah Ban Breathnach. I am finding both excellent reading for very different reasons.
A Flavia quote that I really like: “Tenderness is strength, never weakness. True courage is found in letting ourselves be vulnerable.” A very poignant statement.
November 16 – Well phooey! I just spoke with the research department at the hospital about taking part in a diabetes clinical trial and guess what? I am too good with my own care to qualify! That and the fact that I am a breast cancer survivor of only one year (almost!). She said they would more than likely wait for two years or maybe even five years before including me in a study. Well, poop! I called about support groups in the area and they are all done for the year, told me to call back in January! Geez! A curious thought – why am I keen on joining a support group on diabetes and not one on breast cancer??????????? And, am I complaining that I am too “healthy” to be included in a clinical trail for diabetes?????????????????
Our good news now, Harold and I went to a meeting of our county commissioners last night and our variance (we wanted more land use than allowed by their regulations) was approved to add on the studio, workshop and den to our house. Am just too excited about that project! And more good news for us! The absolutely gorgeous, fantastic, amazing, (lengthy!) guest bathroom renovations are complete! You will be able to check out the before and after photos in an upcoming update!…………..and, Harold and I did every single thing ourselves! When you see them just imagine yourself in there with candlelight, wonderful smelling bath salts and the Jacuzzi whirling away all your aches and pains! We are going to submit the photos, I took step-by-step photos from the beginning, to a home improvement magazine. Maybe you will see us in print one if these days.
Now I have to begin to repot the plants from my garden that will go on the new courtyard and patio when the new studio is completed. We want to start construction as soon as possible so I need to get everything out of there I want so they can bulldoze over my garden. Will I be sad? A bit, but after the last year and a half of illness, surgeries, back problems, the diabetes diagnosis and hurricanes and find I am looking forward to the idea of container gardening in the back on the hard surfaces and I will still have the outer perimeter of the yard with a pathway so will still have something to do to there but I can now focus on my front yard. Before, I never seemed to have enough time to get everything done and I still tire easily so have been feeling overwhelmed by it all. I will be able to easily manage the front yard, back yard edges and the path and pots and pots of flowers and bushes!
I must say, I am on top of the world this morning! Feels great, too! The body massage is helping me so much. I had jury duty yesterday, sat in those hard chairs and benches the whole livelong day and then went to the variance meeting last night – was sure I would not be able to move this morning and guess what! I am fine! I am down to seeing her every two weeks now. I highly recommend deep tissue massage – it hurts a bit but the results are amazing! The mental therapy is a challenge and enlightening, I am still going once a week and will continue for a while, I must follow the road all the way through this particular journey, too. And, my body is finally beginning to feel like my own again. So, boobs are done, back is good, mind is getting there, diabetes is under control, I get a new studio………….life is good. I have come to the realization that all life is a journey, some roads you choose, some you don’t, but they all affect your outlook on life, they have a final destination and then you have to choose a new road to travel. My new road is being decided now as I go through therapy. I am going to change my future destination as I drop off all the excess, useless baggage I have been hauling around with me all these years. Don’t be afraid of therapy or embarrassed in any way. I will admit my biggest hurdle in going for therapy in the beginning was getting over the notion that it was somehow shameful to have to admit I needed help. Remember, I was so angry that my doctor even suggested such a thing! Well, I have since given that same doctor a gift from my heart with my thanks for saving both my physical and mental life for me. I’ve come a long way baby!
November 18 – What a frustrating day yesterday. Computer problems and all of you know how that goes – you could tear out your hair easily! Well, I ended up by pretty much ditching AOL so if you would please change my email address to firstname.lastname@example.org I would appreciate it! Sounds better anyway, don’t you think?
Had a session with Debbie yesterday afternoon (before the computer frustration took place) and we discussed something very interesting that I want to be sure and pass on. I am having a real problem focusing, on what I want to do with my future as far as work is concerned), but seems like everything in general, too, and asked her if she thought I might still be depressed. She said probably a bit but more from what my past is revealing and the fact that I am coming to terms with “lost little girl” that I was (doesn’t that sound sad – makes me a bit teary to write it). I am learning compassion for “her” and it is hard since I pretty much buried all that crappy stuff or so I thought. Seems you r mind can do that but your body still feels like it is dealing with those situations until they are recognized and finally put to rest! Amazing – and……….I can feel it working! I digress, sorry. Debbie sees a lot of breast cancer patients and survivors, probably since she is one herself and the hospitals feel confident sending women to her for treatment. She feels that I am having a “second wake-up call.” She feels that you have the first one when you find you have cancer (I would assume that this whole analogy would apply to any serious life-threatening illness, not just breast cancer) and then go through the whole process. Then………..things slowly begin to get back on track, you get your energy back, you look okay, you have hair again, etc. And, no matter how you vowed when in the middle of the cancer process to change your life you start slipping back into old patterns. Now my body and mind are saying, “Excuse me, what are you doing????????? You promised to change and I am here to remind you of that fact!” When she said that I sat there a bit stunned, as all the pieces started to fall into place! When I looked at it from that perspective I could feel a calming effect beginning to happen so that HAS to be correct! Hard to change from what “was” to “what you really want it to be” though.
New persona – Historian Hilda. She has been faithfully recording all of this and her time is about up. Who knows, I may need her help again sometime in the future but soon she will get a well deserved rest!
November 19 – Just finished with a bout of tearful contemplation. Having my morning coffee on the patio, weather is so beautiful this time of year, and was just enjoying being out there. Going over what I had to do today, what errands I had to run and one is I want to go to Hallmark and get myself one of the Susan Lordi angels by Demdaco, this one titled “Celebration.” I have a small collection of them that relate to my cancer experience. I have “Courage,” “Hope,” “Love” and am grateful I get to add “Celebration” for my one-year anniversary of being a breast cancer survivor. That got me going on what the last year and a half has been like, what I had go through to get here and that did it! Tearful Tess just moved right on in! Not Weepy Wanda, she only comes when I am distraught, Tearful Tess is just plain sadness. Am okay now, though.
Just read an interesting report on “The Stress of Cancer: Seeking Support.” Very interesting. It states that much of the research has been done on women with breast cancer, that between 22 and 50 percent are depressed, and that 33% have acute stress disorder and that 3 to 19 percent have post-traumatic stress disorder (PTSD) which is a condition seen in people who have experienced traumatic events such as natural disasters or military combat. Debbie is treating me as a person with PSTD. Remember I told you I used to cope by “Just not thinking about it” whatever “it” was and that my system failed on me after treatments were over? And that it is why I ended up with depression and acute anxiety that thankfully my oncologist saw it and got me to talk to someone about it? It all ties in with feelings you experienced growing up, how your body reacts to stuff. No placing blame here on what happened as a child, it just is a fact of life that your childhood directly affects how you act as an adult and how you handle things. So, I got through it all like I always have but it was apparantly the straw that broke the camels back as far as what my coping system could handle. Once it “let go” on me all the tightly sealed doors in my mind opened up and allowed all those crappy feelings to start roaming around causing me untold distress. I am learning to allow them to “be” and not try and stuff them away like before where they just sit and wait to pounce on you when you least expect it! Not an easy thing to do, mind you, as they were locked away for a very good reason and it is not fun to drag them out and feel them all over again! However, the good side is that once I do, they get diffused! It is like if I acknowledge them, admit to my inner self that they were indeed “crappy,” that they were not my fault so ditch the guilt, feel, and truly feel, sorry for the little girl that it happened to – the memory remains but the physical feeling that accompanied it and caused the deep emotion is not gone but is very much softened. It really is quite amazing as I have read about analysis, watched “Frazier” on TV and they of course had more issues than any of their patients so really went into all this as a very skeptical person. As I said, I was very, very, angry at my doctor for even suggesting that I might need counseling! I am still a very strong woman but am certainly finding “inner peace” which is both a struggle and comforting at the same time through this whole counseling thing. The article I referred to at the beginning of this long discourse goes on to say that almost half of those patients who met the criteria for distress levels that should be treated had not sought any psychological support because they didn’t think they needed it. That was definitely me!!!!!!!!!!!!!!!!!!! The article also stated that cancer is an isolating experience and that getting support from an outside source (aside from family and friends, you just cannot tell them everything, especially your fears about dying and such – scares the pants off them!) can help people living with the uncertainties of cancer gain reassurance and a better quality of life. I am here to tell you that is all very true. I don’t know how I would be, both mentally and physically, at this point if I had not had counseling. I was definitely on a downward spiral as far as feeling out of control was concerned and so very upset that it was happening after all treatment was over. Little did I know then, that is very often when it happens! Okay, I think I made my point, Soapbox Sue is getting down off her soapbox now! If anyone has any questions they would like to ask me about being in counseling I would be happy to answer them just as I do any questions about breast cancer. After all, they go hand-in hand!
A couple more Flavia quotes before I end this journal entry:
November 26th – I am officially a one year breast cancer survivor!!!!!!!!! So fitting it was the day after Thanksgiving. I was actually away from my computer visiting relatives in another city for the holidays on this day. It was a bit anticlimactic, as it was “just another day.” I did not wake up in awe or feel anything special that day. I thought I would feel great relief and be reduced to tears but no, all was completely normal. What a relief! New persona – Savannah Survivor!
Well, this was supposed to be the last update but I am already to page six and am on a roll! So, consider this part one of the last updates.
I want to wish all of you the very best holidays ever and hope you have a Happy Healthy New Year!
Margot a.k.a., Perky Polly – Keeper of the Perky Twins, Soapbox Sue (she does seem appear quite often, doesn’t she!), Tearful Tess, Savannah Survivor, Sexy Sue, Historian Hilda, and I am still Ravishing Red-headed Real Hair Rita!
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