Hello Everyone, I'm so blown away at the courage and strength you all are showing. I'm sorry this will be kind of long, but it all fits together to the diagnosis I now have.
When I was 35 in 1985 (yup, folks, that's 24 years ago), I was diagnosed with Stage III, Grade IV Breast cancer on my left side. I went to MD Anderson and went on an investigation protocol to determine the appropriate dose of adriamycin which was brand new then and not yet a first line drug. Everything was fine until l992, when I decided to have a prophylactic mastectomy on my right side and reconstruction on both sides. Found Stage I, Carcinoma in Situ on the right side (well that's still OK, not too bad). Between then and 1995, though, I had various things happen: Silicone implants leaked (considered OK in 1992), an open chest surgery for a way huge mass on my thymus that was benign! (whew), Thyroid Cancer (OK, I can handle that), diagnosed with Antiphospholipid Antibody Syndrome (a rare disease that keeps the blood from clotting correctly), and various other, but minor ailments. All through this I was a breast cancer patient advocate for 10 years for cancer patients who were Stage III or less, and was able to keep my spirits high, was happy, and felt pretty care free and really didn't worry a lot about my health. The last couple of years have been rough though.
Last November 2008, I had a massive DVT and had "hundreds of pulmonary emboli in my lungs". Was in CCU and the CCU step down unit for two weeks - couldn't breath and went home with Oxygen 24/7. About 7 months after that, I still was on O2 and had an even harder time breathing and they discovered fluid in my right lung. I was told by the ER doc that it was either an infection or cancer. WHAT, did he say? No, it couldn't be cancer, it has been 24 years since the " really bad" cancer on the left side. Scans were mostly showing the scarring and the healing emboli, and a couple of spots that had been in my right lung for ten years but hadn't grown or budged all that time. They were not in an area that could be biopsied (it was suggested that it was silicone that had traveled there). Drain the right lung (not fun), but the fluid came back in less than two days. Still in breathing distress even though I have O2 still. Pathology comes back - Breast Cancer Stage IV..... The "bad cancer side", the left side, is still OK, but the Stage I cancer on the right side is the one that did the dirty deed. I had my first double dose of Faslodex a month ago and just had my second dose. A couple of days ago, I found a lump on my right side and will have a sonogram on Monday. A pet scan in two weeks. (I couldn't have a scan earlier, because I couldn't breath and was coughing continuously and couldn't be still for over an hour.) I'm scared to death that the Pet scan will light up like a Christmas tree.
I'm devastated and I'm scared to death!! I really need to know, guys, "How on earth do you do this". Do you ever feel happy again? Is feeling carefree gone for good? Can we really get used to this diagnosis and get over that hump so we can have some semblance of normalcy again?
I have been watching this website, and I am so amazed by all of you and in awe of your strength. PLEASE, tell me how you guys have gotten there. I'm from Kansas, so I'm used to the "Wizard of Oz" jokes, so I can use it as part of my storyline: Instead of "following the yellow brick road", as we know now that the "great Oz" didn't have the answer. The answer instead lies in our hearts. You all, dear new friends, have "brains", "hearts", and "courage". Right now I am the trying hard not to be the "cowardly lion" and am trying to put on a good front (but I think I'm failing) so I need your courage. I went in for my shots the other day with my red lipstick on and wearing my red patent high heel pumps, so I'm trying.....but I really need to bypass the "yellow brick road".
Still wearing the red pumps,
Karen
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Hi, my name is Karen and I'd like to Introduce myself...
- By Kmungles
- Posted November 1, 2009 at 10:16 am · 13 replies
- In Newly diagnosed
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Explore topics in this discussion:
Cancer Surgery Counseling Breast cancer Anxiety Pain Adriamycin Palliative care Carcinoma in situ Thyroid cancer
13 replies
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- By g8orfan
- Posted November 1, 2009 at 11:51 am
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Karen, Truth be known, there are times, I do not feel very brave. That is why the wonderful ladies on this site have become important to me. There are people in my life who need to see only the brave me so I keep up that front. Then I come to this site and read the postings of gals who are dealing with much the same issues. There is knowledge, experience, and real emotion expressed here which is so helpful in knowing how to deal with this situation with integrity, knowlede, and dignity. I wish I had the time to read all of the postings, but I stop myself, so I can go do my daughter's laundry, or drag the oxygen to the grocery store, or make the beds - those mundane activities I was not able to do for months.
I don't know for how long I will be able to go about the "normal" activities, but I can do them now. And when the time comes, as it will for us all, to take our leave, I hope I will have been en-COURAGED adequately to depart with dignity. And no doubt, much of that lesson will have been taught by the gals here.
- By nancyc
- Posted November 1, 2009 at 2:09 pm
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Karen, It sounds as though your bravery and strength has been sorely tested in the last several years, and it's understandable that you're feeling frightened and overwhelmed. I know that I certainly was when I first learned that instead of st 1 BC, I actually had st 4.
What I've found for myself is that time helps, action helps, and so does talking with a counselor, preferably one who deals mostly with cancer patients. The part that is the most difficult is not knowing what is going to be done to deal with the cancer, and not feeling as though anyone around you understands what you're going through. You might contact a local hospice/palliative care organization. They can help with your symptom management, and provide help to you and your family with emotional issues that are arising with your illness and all of the uncertainty attendant to it. Palliative care is a rather new speciality, but it can make all the difference in ones' quality of life. Pain management and general comfort measures and quality of life are of primary importance.
It's understandable to try to "protect" your family and friends from what you're feeling, and how frightened you are, but that serves only to put barriers up. If you're not willing to "talk about it", they'll feel unable to bring it up, and you'll all waste a great deal of energy "protecting" one another, and you'll feel very lonely and isolated. Having been a visiting nurse for a long time, I can tell you that especially with good professional help, you and your family can navigate this awful time with much more strength and closeness. I'm so very glad that you've found this site. For live chat, I recommend breastcancer.org. Consider yourself hugged.
- By Kmungles
- Posted November 1, 2009 at 2:17 pm
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I was really having a hard time of it last night. All the "cancer ghosties and goulies" came to visit and messed with my fears. You will usually will see me in a positive way. After re-reading my post again, I feel really guilty and almost embarrassed for being such a whiner. Feeling better today after a long talk with my wonderful husband - he always can make me laugh, and there's nothing like a good laugh to change a mood.
- By StickiVicki
- Posted November 1, 2009 at 2:38 pm
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It takes all of us time to adjust to a stage IV diagnosis, and this is what you need to allow yourself to have - time to come to terms with this. Try and find one or two people with whom you can share your true feelings. We all feel the need to hide them in some way; from fear of rejection, of scaring others away, of just not wanting to admit how scared we actually are!
I would recommend Bernie Seigal's "Love, Medicine and Miracles" as a real inspiration to help you get started. We all fear being a burden and loosing our independence, maybe more than the symptoms, but I think the more you hold on to that fear the more likely it is to happen. When you learn to live in the moment as much as possible you can appreciate what you have now, and not what will come in the future. It is a concept known as Mindfulness.
You have had a really rotten time with all of these things and that must make you feel as though there will never be any real quality to your life again. But there can be. If you can, do contact a hospice. The mention of hospice is scary, but their remit is all about the quality of life rather than the end of life; and they should have counsellors who can help you, and possibly also alternative therapies to help you relax.
I hope the sonogram goes well tomorrow, and do let us know the results. The same with the PET scan. We all have health/mood swings. One day I am sure the pain is connected to my left hip being arthriticky (and slightly deformed from birth) to being sure it is something really bad. But I can't spend the rest of my life attached to a scanner, and much as it would be great to know from week to week how things are going. I have too much else to do.
Remember two things.
1. We are living with cancer, not dying of cancer.
2. Cancer is a word, not a sentence.
Keep wearing the red lippy and shoes, but not too high, you don't want altitude sickness as well!!!
Another cyber hug on the way, Vicki xx
- By Kmungles
- Posted November 1, 2009 at 2:55 pm
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Thanks, Nancy. You have given me some good information that I will certainly use. I just became unglued for a couple of hours, and felt so frustrated that I cannot yet do some of the normal things that I took for granted (like breathing!), and I've become a little bit of a hermit (very unhealthy). The doc says that I will soon be feeling much better, so I'll be shopping again soon. I'm going to hold him to that!! Regarding what you said about protecting family and friends about what is going on with me gave me a new insight about how I am handling this. They have always been there for me with some of the other messes I've been in, but I was like the Energizer Bunny and kept on going and always managed to get back to normal. I have been keeping up a front to most of the those who are closest to me and not allowing them in. This mess I'm in is not going to go away, so opening up will help. I also know that with some counseling it will get better. I have already looked into it and even made an appointment. Thanks again, Nancy
- By Lukesgrandma
- Posted November 1, 2009 at 5:34 pm
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I second all the advice you have received here, and don't ever feel guilty about whining! If anyone has a right to whine, we do. I will add one suggestion: if you aren't already on an antidepressant, try that. I've been taking one since my diagnosis, and I think it's done wonders for me.
Sending a big hug your way,
Susan
- By nancyc
- Posted November 1, 2009 at 6:42 pm
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Karen, I'm so very happy that my advice helped. Don't beat up on yourself about this. "Whining" is not an appropriate label for expressing the normal fear and anxiety about being diagnosed with late stage cancer. One measure that I've often used about negative self talk is "If a friend was going through this, would I tell HER that?" It's great that you've been proactive in scheduling a counseling session. Good for you. The following link is to an excellent teleconference given via Living Beyond BC a couple of years ago. It's by a senior psychiatrist who had done a study of the trauma experienced by women diagnosed with BC, and how that trauma effected them and those around them. You can print the transcript....I know that it'll be of help to you and your family to read and understand.
http://www.lbbc.org/data/transcript-file/LBBCemotions07.pdf
- By Beachbabe
- Posted November 2, 2009 at 6:52 am
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My Dear, you look mahvelous in those red pumps! Don't beat up on yourself--we all have our down days, believe me! Anyone who gets the late stage cancer diagnosis and looks at it as a day brightener is a loony toon! We all live in fear and pain--but many of us refuse to give in to it. It is my personal belief that giving in to the 'downers' for too long only gives cancer a leg up in the wrestling match of my life.
You will find friendship, love, support, compassion, and empathy on this site. We are there for one another in good times and in bad. We listen, give advice, and even cyber hugs when required. Whining is fine, we all have whine days...
And I think the suggestion of an anti depressant is good if you find you are having too much whine. I was put on a low dose for hot sweats and it did help me fight the green meanies that were hiding under my bed. I still have down days, but for the most part I'm able to pull myself up by my big girl panties and go out there each day and be a cancer fighting super hero. I hope you find the strength to do so as well!
((hugs))
- By kleighk
- Posted November 2, 2009 at 2:59 pm
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Karen, I'm glad you're feeling better. But keep that appt with the counselor. I've been stageIV for over 8 years and I've been on antidepressants for a while, but never felt the need for counseling. I've changed my mind lately, though, so my project this week is to find a counselor. I have been having those nights when I lay awake and listen to the monsters. I just had a bunch of scans and everything is status quo so there really isn't anything new to be worried about, but my brain for some reason won't accept that. Sometimes I feel convinced that something is wrong and nobody can find it. So, even those of us that have been dealing with this for a while still have those whiney times.
You're in my prayers,
Karyn
- By sr2603
- Posted November 2, 2009 at 7:16 pm
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KMungles - you have been through so much and battled through it all. You can do it again. Facing Stage IV is tough, very tough. Its much harder than stage III. For me it was anyway. My advice is to take one day at a time and dont think too far ahead. Sticki Vicki's recommendation by Bernie Seigel is good. I seemed to relax after I had read his books.
You are not a whiner, you are a stage IV cancer gal who has the right to come on here any time day or night 24/7 365 days a year. We are here to listen to you, send you cyberhugs and offer what support we can. The thing is, we are all in the same boat facing the every day challenges of this wretched disease!
tkae care.
- By Kmungles
- Posted November 2, 2009 at 10:54 pm
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Thank you so much, my wonderful new friends. Such good advice from all of you, and I can feel the love.
love to you all,
Karen
- By 2xnow
- Posted November 4, 2009 at 8:29 pm
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Think positive, keep your head up and you will be okay. It is a tough road out there and now to have to go through this ordeal not knowing day by day what is going to happen - it's not easy. Take one day at a time. I use to wake up at night and dwell on the what ifs. I have had three months to absorb this new diagnosis. Easy - it never is. They say a positive attitude and prayer are everything in beating this disease. Keeping busy also helps not only with the time but with the mind.
- By crinky
- Posted November 5, 2009 at 7:40 am
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hi Karen,
you've already started on your road to healing by reaching out here. I don't write on the site much, but I read the stories every day, they are written by brave women, just like you, who are trying to put one step in front of the other while facing cancer...you already sound pretty brave yourself. You've been through alot - you're going to do just great. Thanks for sharing your story.
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