I received my post surgical biopsy report yesterday and much to my surprise it was inconclusive. It stated that the specimen did not survive processing. Of course this was very disturbing to learn. I have since learned that this occurs for various reasons, not always within human control. I have to believe that my doctor’s initial observation of a herniated muscle causing the lump is correct. I just cannot subject myself to additional surgery right now, and continued surveillance will be vigilant of course. This is where my faith rubber hits the reality road, for sure!! My follow up appointment is in another week.
This was the word I received from my oncologist in a phone call today. Last week’s CT scan of my right lung noted no changes (or growth) to the nodule seen in March, and they want to re-scan it again in 6 months. An enlarged lymph node was noted as well. I guess I am suppose to feel relieved….”satisfied”….but somehow I feel, well, in limbo. Like I am waiting for a bomb to drop. They wouldn’t give me the “all clear”…And maybe this feeling comes from having been through cancer and having a bomb dropped on me once before, without warning, without symptoms, vulnerable and scared. A post traumatic stress disorder, of sorts. Always feeling like I must remain on guard. Always on watch. Terrified of it coming back again, terrified of it killing me. I’ve probably read w-a-y too many stories and heard far too many unfavorable outcomes, and so it’s easy to let myself fear the worst, but then I must remind myself that all too often its not the good outcome stories we hear about or the stories of triumph and survival, and I know there are far more of those than not . But for the time being I must be satisfied with this result and consider it as my doctor said, “good news”. 🙂 I am taking an oral anti-cancer drug now which is suppose to starve off any lingering cancer cells that might try to grow, and I take this drug for the next 5 years so I am doing everything within my power to stay cancer free. That is all I can do. “Give it up to God” what I can’t do, as my son says! Besides, there’s nothing telling us this that this nodule is cancerous, unless it starts to grow, and so that is what they keep checking.
This coming weekend that son, Keith, graduates from high school and leaves 2 days later to work at Young Life camp at US Army Camp Darby, Italy, on crew along with a couple hundred other staffers. We are busy getting him packed up and ready to be away for a month. Needless to say he is a wee bit excited!
Fathers Day orders poured in last week and I have been busily stamping up my projects and trying to stay afloat! This, plus making plans for Tim’s retirement and booking all of the details for our England/Ireland trip give me little time for fretting! Now to go to a cupcake!
Here is a great song about how I know one can get through trials of any kind. It is called “I Get On My Knees”. It’s called prayer…crying out to the heart of God…take a listen! If you can’t see the embed video, click here . “Cuz I’ve learned in laughter or in pain, how to SURVIVE! I get on my knees!”
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The mri and ct scan came back yesterday. My cervical and thoracic spine have “multiple hemangiomas”. These are typically benign vascular tumors. Now I am waiting for my appointment with orthopedics to find out what we can do about it. Lots of waiting these days. Still no relief from the numbness in my back.
From what I am reading these can become large enough to cause compression fractures but can be shrunken using radiation. I really have to find out more when I talk to the doctor but the good news is that my oncologist isn’t concerned about a cancer of any kind at this point. Radiology recommended a follow up ct scan in June to see if there are any changes on a nodule that showed up in my lung (which honestly may be absolutely nothing).
Thank you for your continued prayers.
I spent last weekend at a 2-day training to become a certified counselor with Network Of Strength, a 24/7 peer support hotline for breast cancer patients and their loved ones.
I attended, along with 16 other women from around the country, and shared a hotel room with a woman whom I met at my oncology ward, who was also in training. Together we all learned how to help patients who call the hotline to discuss their most pressing issues and emotions while dealing with diagnosis and treatment for breast cancer. I learned a lot about various aspects of the disease as well as resources that are available to patients. I also learned a lot about the social prejudices that often keep wo(men) from seeking screening and treatment, and how to deal with people when they are at the end of their rope and want to end their lives. It was an intense and packed-full weekend, but one that assured me that this is the direction my life needs to go as I seek to turn my cancer experience into something that helps other people. Network of Strength’s mission is this:
“…to ensure, through information, empowerment and peer support, that no one faces breast cancer alone.”
This week I took my online test and I passed! Starting Wednesday and Friday this week I will begin shadowing calls that come in through the 1-800 hotline, listening to my manager speak with people who call, and then reviewing various aspects of the conversations and what I have learned. Next week she will shadow me as I accept the calls. Within the next few weeks my computer and phone will then be wired to their hotline headquarters and I will begin to be scheduled with shifts to be covered throughout the week while I am at home.
This new position will force me to STAY home more, which I need to do in order to complete everything around the house and with my business. I thought I would get a breather after the Christmas holiday rush, but things have picked up as much as they did in mid December! The only way to ensure that I don’t get behind, is to commit to staying home more and filling the orders as they come in.
Good news is that I haven’t had any allergy outbreaks since beginning the daily Allegra last week, and the rest of my blood tests should be in by the end of this week. Hopefully after the doctor reviews them all she can diagnose what the underlying cause of these are and what can be done to correct it.
Tonight we have 2-6 inches of snow forecasted, this, following 5 inches we got over the weekend! I think 2010 is now making up for a lack of snowfall we haven’t had in the last 3 years!
The training has begun! I am walking an average of 3.5 miles a day to prepare for the Avon Walk that I will be doing in just 6 months. The fall foliage and cooler days makes this an enjoyable activity and I also frequent the gym for additional weight lifting and endurance work outs. I held a fund raising event at the breast care center at Walter Reed Army Medical Center last week and raised 8% of my goal by selling my jewelry creations. So far I am at nearly 30% raised so I continue pressing on with those efforts a little bit every day. Thank you to all who have donated so far! My Avon Walk page can be viewed HERE.
This week my MRI results came back all clear so that was good news! I must admit I held my breath for those 8 days waiting for results. I am told that this feeling of dread lasts a long time, at least until the ten-year survival point. Even then, with no cure for breast cancer, the fear of recurrence looms all the time. The MRSA infection in my arm continues to heal well and is down to a dime-sized scab with some scarring.
In the meantime I celebrate LIFE and help those newly diagnosed whom I meet, which seems to be nearly every week. The numbers of women affected by this disease never ceases to amaze me. Giving them hope and support gives me a reason to continue fighting for a cure.
Having cancer has taken many things from me beyond my control. It has made me vulnerable and helpless at times. Part of the fight in cancer is to regain something I CAN control, and decide what is right for me.
I believe everything and every person God brings into my path, in this journey, is His divine intervention. There are no mistakes with God! A couple of months ago I met a dynamic woman through my kids’ high school. She is an 18 month breast cancer survivor and a shining example of strength and courage to me. A powerhouse of energy and positive attitude, I knew I immediately had to know her! The more we talked about life beyond treatment, I learned from her and other survivors, that lifestyle changes must be made to remain cancer free. No more free walk in the park, not exercising and eating whatever I wanted to!
Every study I have read links diet and exercise to lower recurrences or development of all types of cancers. Even though I have been fortunate to be able to maintian a healthy weight my whole life, and don’t struggle with high blood pressure or diabetes, which run in my family, my greastest focus NOW is to never go through cancer treatment again. Ever. What better time than NOW to seize hold of something within my control while other issues are still out of reach for me (such as getting my hair to grow FASTER)! I choose what to eat. I choose where to spend my energies and I choose who I want to become.
So today, along with my new friend, bandana on my bald head, I tried a spin (cycling) class at the local gym and guess what? The instructor is another breast cancer survivor, 8 months further ahead than me, and she has the same oncologist as I do! What are the odds of that? As I sat on the bike at the back of the room, watching her at the front, with all her enthusiasm and zest for life, tears filled my eyes as I could see light at the end of this dark tunnel of treatment. I saw that I can raise my head high and smile. I saw that I can have the body I want to have, or at least one better than what I have now, and that strength will come through hard work. I have never been one for sweat, in fact I hate exercising, not to mention PAIN! This would be a very big step for me to take on a lifestyle change like this. Even two or three times a week of walking around the block would be a huge milestone for me, especially if its hot outside! But I have to start somewhere, and meeting these two women is like an ah-ha moment for me. A motivation for change and a new beginning. Like two angels leading the way, that God placed right in my path when I needed direction.
I’m sure I’ll be barely able to walk tomorrow when I wake up, but in time I hope to feel better and love the body God has given me, glad to be alive.
Today is June 1st, 8 months since my breast cancer diagnosis. Sometimes it seems a lifetime ago and sometimes it seems like just yesterday. Some days I feel I have survived the worst of it and then some days I feel like I am still fighting. I have met many breast cancer patients and have found that some call themselves ‘survivors’ from their date of diagnosis and some from the date of their surgery. I don’t know when I will call myself a true survivor. All I know is that I don’t feel like one just yet.
Maybe that’s because I am still going through IV infusion treatment, spending the day in the chemo ward every 3 weeks, and maybe that’s because I still have very little hair at all, and my fingernails and toenails are rotting, bleeding, and falling off. ( Gross, I know, but that’s the raw truth.) I escaped to a movie theater a few days ago and got engrossed in the show, forgetting for three hours that I had breast cancer, only to go to the restroom after wards and find blood on my shirt from my bleeding fingernail. I wrap band aids around them and try to keep them on. “This part is taking too long”, I think to myself, this part of regaining my body after chemo therapy. And even the therapy I am getting now, though not as toxic as the last four and a half months, still causes me headaches and fatigue and I am scheduled for nuclear heart scans every 120 days to check for cardiomyopathy, a side effect to the drug Herceptin, which I get every 21 days.
(Tim and me, out to dinner last weekend, with his parents who came to visit from St.Louis)
On a lighter note, though, I was traveling back from California a couple of weeks ago and in the airport magazine/book store the clerk said to me, “I love your hair color! It is really nice with your brown eyes.” I smiled and then leaned over to her and said, “I have a dirty little secret to tell you”…and then I told her about my wig and breast cancer.
I thought to myself, I could say “thank you” and go about my business, or I could put a face to breast cancer and let people know that it is not your great aunt’s disease anymore. It is affecting more women than ever before, in staggering numbers and to people whom you never would have suspected. Many celebrities have hidden it from the public until now. The risk factors are becoming more widely advertised and discovered by scientists.
I don’t know what my life after breast cancer treatment will look like, but right now it includes a desire to let people know that finding a cure, though a great hope for us all, is only one piece in a very larger puzzle of finding the cause. The more I read, the more I see how our society and foods, and lifestyles play a big role. Now if I could only get myself to make some of the changes that will reduce my risk of recurrence such as daily exercise and eating a large diet of fresh fruits and vegetables! I’d better get off this computer now, and put on my walkin’ shoes!!
Got the letter in the mail from the medical center’s radiology dept. yesterday, with the finding: “Possible malignancy – schedule biopsy through your surgeon”. Does everybody’s scare include a letter like that even if it turns out to be benign? There were about 10 choices with little boxes beside each one stating things like “Please retun for additional views as your films are not conclusive enough for a thorough reading”, or “looks like a benign nodule, call for follow up in 6 months”, etc…but mine was the very last box on the page. I felt like falling apart but I didn’t. I put the letter in my filing cabinet and shut the drawer. Don’t want my kids to see that. I guess I already knew the news, but this was the first time I’d seen that word…malignancy. It’s never had a good reputation.
It’s been about a month since I last posted to this blog. I’ve been very busy this summer with two college sons home and two high schoolers needing taxi service, and sharing a car with my husband while the kids are working. I’ve also been growing my jewelry business now that I have decided to be a full time stay at home mom (or shall I say Work At Home Mom). I moved my jewelry making studio into the dining room but that has begun to look cluttered and outa control, so I am moving it to the basement now in hopes of staying out of my family’s way.
Just before we left on our beach vacation I had my annual mammogram. I’ve had a lump before, but after being told many times not to worry, that it was nothing, and after realizing it hadn’t grown from its pea size in over 4 years, I honestly started to believe it was nothing and decided to put it off. I was now 4 months overdue for my mamogram, so off I went. They told me in two weeks I would receive the results, and handed me an envelope to address to myself so they could mail the results. Two weeks never came. Within just 3 days I had a phone call and they mailed a letter to me (neither of which I got until after reurning from vacation a week later!) to return for a diagnostic mammogram “They’ve found something” it said.
So this week I went for the smash- you- flatter- than- a- piece- of- paper test. (That other one was just a smash- you- flatter- than- a- pancake test! ) When I walked into the room , the technician placed my first films up on the light box to show me. “Here”, she said, “is what we are going after”, and she pointed to a white sort of starry “thing” in the center of my breast. “We need alternate views of this”, she said, “just to be sure it’s not just a reflection or film mistake”. I asked her if this was the pea sized lump I’d been feeling for years on my side, and she said no, this was behind the nipple. So I put on the gown and she took the films. After seeing stars from the painful procedure where they stretched my nipple to Kingdom Come, the technician sat me down and told me to wait to be sure the films turned out, and then after that I could leave. Soon she returned and told me that they needed to do an ultrasound. So down the halls we went to the ultrasound room where a doctor/radiologist did the scan. She took what seemed like a hundred shots and measurements of what appeared to be a gray blobby ball with folded, wrinkled edges, and when I asked her how big it was she said about an inch or the size of a quarter (except it isn’t flat). When all was done she told me they needed to biopsy it with a tissue biopsy to determine what it is. With a totally doctor sort of look on her face she told me they always hope that it is benign. No personality, this woman, just a serious, blank matter of fact look. Inside, I was feeling horror. “They’ll call you in 3 – 5 days to schedule your procedure.” The next day I thought to myself, why should I have to wait for THEM! So I called them up myself and am now scheduled 19 days from now for a tissue biopsy where they make a 1/4 inch incision and use a proble to extract tissue. Then, they’ll take more films (ouch!) Sounds lovely doesn’t it? The part where she told me they’ll “Numb you deeply” is the real part that makes my skin crawl!
So here I am waiting and wondering to myself if this is what the warm , burning sensation I’ve been feeling for months in my breast is, and kicking myself that I hadn’t gotten it checked sooner, and what are they going to tell me in 3 weeks? I’m angry that doctors for years have told me that a family history that goes back 3 generations to two great-great-aunt’s deaths from breast cancer at 44 & 46 years of age, but skipped the last two generations, means nothing at all. And maybe it doesn’t, but what if it DOES matter? Angry at myself for putting things off. Angry at that matter of fact doctor who has NO business working with women in medicine because she has no heart…I’m just angry right now. Maybe I have no reason to be, and maybe it really is nothing at all but whatever it is, it’s going to have to come OUT!? That can’t be fun,now, can it!?
I shared all of this that very same day with my best friend, because after calling your mom and your sister, that is the first thing you do after getting news like that! She told me she’d been fighting with her clinic for months (6 months) to get her diagnostic mammogram which her nurse practioner prescribed, and that everyone kept giving her the run around because it didn’t come from a “real” doctor, and she had finally thrown up her hands and just said forget it. I’ll wait until next year when I can request a “real” doctor. Now, she says she’s not waiting. I hope that if you’re reading this and putting it off for yourself, that you won’t either.
It worked for me and I hope it works for you. Check out Works For Me Wednesdays at Rocks in my dryer!