Listen to your life. See it for the fathomless mystery that it is. ...Touch, taste, smell your way to the holy and hidden heart of it because in the last analysis all moments are key moments, and life itself is grace. Frederick Buechner
This post will be short but I wanted to stay in touch....I could talk about my hair - which is still a cross between Woody Woodpecker and Foghorn Leghorn. I have a perpetual Mohawk every morning when I wake up and there is still no response to the use of a brush. I could talk about the progression of physical and emotional symptoms, the anxiety of recurrence, the anxiety of facing the future and all that that entails. Jobs are not available in abundance at the present time and nothing is guaranteed.
But, instead, I'll talk a little about staying grounded. This week marks the One Year Anniversary of being CANCER FREE!!.....maybe....you never know....My last cancer was found by pathology following my "just in case" mastectomy and reconstruction on August 11, 2009. On August 22nd, it will be two years since I was first diagnosed. I can remember it like it was yesterday.
But a lot has happened in the past two years. I was hoping that I'd feel better by now. I have had a difficult time this summer dealing with the heat. I have found that I can't deal with it. It wipes me out. Of course it doesn't help that it has been 100 degrees almost every day. The GI side effects from chemo and Femara make me glad that I paid attention to Jamie Lee Curtis and her Activia obsession...very helpful....but I am also healing and getting stronger. My body is just beginning to feel like me again.
I saw Dr. Kennedy on August 2nd. I had my port flushed and it was easily accessed for blood. I've got the routine down. As I was sitting in the examination room remembering how stifling hot it could get in the winter, Dr. Kennedy told me that she wanted me to start taking Boniva (from Jamie Lee to Sally Field....love the commercials of her playing Twister, or sitting on the dock...notice that the camera does not show her getting up from the sitting position...) Anyway, the Femara depletes calcium so I am taking calcium supplements with D3 and soon I will add Boniva to that. If you ever want to scare yourself, read the possible side effects of that drug. After a thorough exam, Dr. Kennedy seemed happy with my progress. I will be seeing her again in December and having my port flushed in October.
I am humbled by the fact that so many of the people who went through treatment with me have died. There have been many losses. I ask all of you to please pray for the family of my friend Carole Oggero who died shortly after her diagnosis. She was kind and generous and loving. She was a good friend to me and helped me during my treatment. She sent me a quotation that I kept next to me and read every day. I will miss her. Please pray also for the family of Tom Donahue (especially for Lucille who will never know how much her love and support has meant to me) Tom always called me "Susie Q" and was a model of faith. My friend Beth went through treatment when I did and then died following a recent surgery. They are all in my prayers.
As always, I have more questions than answers so I continue to sit quietly and wait for the answers to come. I have re-read this whole blog from the beginning and what I have learned is that....I am pretty funny....stay tuned for other musings and aha moments....
Monday, August 16, 2010
Thursday, May 13, 2010
When Did It Become 2010?
Well hello, I've been gone a long time. I don't know if any of you out there are still checking the blog but I will mention that I am back on Facebook and maybe some of you will pass it along.
I just re-read my last post and I wrote it right after my last surgery. There is probably some significance to me taking a break at that point. It was more than just getting ready for the holidays. I can see it more clearly looking back. That last surgery represented the "end" of active treatment for my cancer. That is a scary thing...I didn't realize what an impact that would have. Oh sure, I still had lots more doctors' appointments on the horizon before I would be able to settle into a routine, but there would be nothing new (except contemplating whether or not I wanted Gottlieb to create "accoutrements" for my new boobs now, later, or never....) I had similar feelings when I finished chemo. I was more comfortable doing something to fight the cancer, than trusting that everything that could be done at this point, had been done. It is not that I am waiting for the cancer to come back, it is just that it is uncomfortable for me to feel so helpless to do anything that might make a difference.
I am writing this in May, so of course there have been some things I can do like making lifestyle changes - becoming more active again, going to the gym. When I got the clearance to go back to the gym, I was told to spend only 5 minutes doing an exercise or on a machine (!) I quickly learned that that was all I could really manage. But I have been progressing slowly but surely.
One of the things that annoyed me most at first was that I had not been adequately prepared for the extent of the reconstructive surgery I had and the time needed for recovery. The surgery and the expansion process, especially on the side with the flap, was more painful than I had anticipated. Even after the "bricks" were removed and replaced with silicone implants, there was more pain than I had experienced with my mastectomies alone. And, my new, faux boobs did not feel like they were part of me. At that point I was seriously questioning if I had made the right decision for me. I mean, being able to put on a T-Shirt without a bra or wearing a bathing suit without a prosthesis did not seem like adequate reasons...and then I started to heal...deep breath....and my body started to feel like my body again (with some minor differences...) Thank God. It was a good decision. For me.
I did go to see Dr. Kennedy on the 15th of December and again in April. I will be seeing her every four months for at least the next 10 years. I took Tamoxifen for a couple months until everyone was sure that I had been catapulted into menopause, then I switched to Femara. (I may have mentioned this before but I have to tell you, the memory is definitely not what it used to be. Anyone who has known me a reasonable amount of time knows that I could recall and quote from conversations that took place years ago, I could remember names and birthdays of all my childhood friends...sadly, that is no longer one of my gifts...) Dr. Kennedy wants me to follow-up because of fluctuations in my blood pressure (one day 120/70, one day 150/100). I am hoping that I can regulate it with diet and exercise.
My hair is growing back in a way that is most disturbing. For the longest time my bangs didn't grow at all. I am unable to maintain any style at this point, and there is almost no use brushing my hair unless I have just stepped out of the shower since it seems to have developed a mind of its own. We have been doing the "trim around the ears and clean up the neck" at home hair care but one day I was out and saw someone in the street, dressed up in some animal costume, holding a sign up advertising a "Grand Opening" of a new Great Clips. They were offering haircuts for $2.99. Can't beat that. So I got my hair cut. Even though I brought pictures of what my hair used to look like, it still looks like I'm insane....sigh...but it is a little better. I have a coupon for $4.99 for May, $6.99 for June, and a $4.99 that never expires....so I'm set for a bit...
I have also taken other small steps. I went to a CPSP meeting (College of Pastoral Supervision and Psychotherapy) and really enjoyed reconnecting with colleagues and friends. I told my story about the "chaplain as patient" and red a few excerpts from the blog. I was able to speak in the JFK Place of Prayer during the noontime service and then met with the chaplain students to share stories. It was strange to be in the Place of Prayer - the last time I had been there was for my graduation 4 days before my diagnosis. I've worked at JFK for 27 years and yet I felt somewhat like a stranger there at first. I felt the same when I went into the office to see my patients. I had been doing phone sessions but now I am trying to alternate between phone sessions and in person sessions.
Now I am in search of a chaplain job. I have no idea when the next step will come and I am trying to stay positive and open to all possibilities. Fatigue is still with me, I am unable to tolerate the heat (or the cold for that matter), my moods are all over the place, I have joint pain every day and it is difficult to move around after 9pm....and, you can set your clock by my 11pm hot flash - bright red sweaty face.....I'm not complaining - I am just acknowledging that things are different. One of the reasons I am going to continue to blog is that what I have heard from other women is that this part of the process is when everyone thinks it is "time to move on because the cancer is gone and the treatment is over". While this is true, I am finding that physically and emotionally this is a difficult time especially because people want you to be better, to put this behind you and stop talking about it already...I had fallen into that trap myself by telling myself that I should be feeling better already! I have had to learn to be patient with myself and my body. That's an ongoing process and it is hard. My emotions, well, let's just say, they're another thing. Stay tuned - it has been very helpful for me to tell my story and to have you listen and share your thoughts with me. I've missed our chats.
I just re-read my last post and I wrote it right after my last surgery. There is probably some significance to me taking a break at that point. It was more than just getting ready for the holidays. I can see it more clearly looking back. That last surgery represented the "end" of active treatment for my cancer. That is a scary thing...I didn't realize what an impact that would have. Oh sure, I still had lots more doctors' appointments on the horizon before I would be able to settle into a routine, but there would be nothing new (except contemplating whether or not I wanted Gottlieb to create "accoutrements" for my new boobs now, later, or never....) I had similar feelings when I finished chemo. I was more comfortable doing something to fight the cancer, than trusting that everything that could be done at this point, had been done. It is not that I am waiting for the cancer to come back, it is just that it is uncomfortable for me to feel so helpless to do anything that might make a difference.
I am writing this in May, so of course there have been some things I can do like making lifestyle changes - becoming more active again, going to the gym. When I got the clearance to go back to the gym, I was told to spend only 5 minutes doing an exercise or on a machine (!) I quickly learned that that was all I could really manage. But I have been progressing slowly but surely.
One of the things that annoyed me most at first was that I had not been adequately prepared for the extent of the reconstructive surgery I had and the time needed for recovery. The surgery and the expansion process, especially on the side with the flap, was more painful than I had anticipated. Even after the "bricks" were removed and replaced with silicone implants, there was more pain than I had experienced with my mastectomies alone. And, my new, faux boobs did not feel like they were part of me. At that point I was seriously questioning if I had made the right decision for me. I mean, being able to put on a T-Shirt without a bra or wearing a bathing suit without a prosthesis did not seem like adequate reasons...and then I started to heal...deep breath....and my body started to feel like my body again (with some minor differences...) Thank God. It was a good decision. For me.
I did go to see Dr. Kennedy on the 15th of December and again in April. I will be seeing her every four months for at least the next 10 years. I took Tamoxifen for a couple months until everyone was sure that I had been catapulted into menopause, then I switched to Femara. (I may have mentioned this before but I have to tell you, the memory is definitely not what it used to be. Anyone who has known me a reasonable amount of time knows that I could recall and quote from conversations that took place years ago, I could remember names and birthdays of all my childhood friends...sadly, that is no longer one of my gifts...) Dr. Kennedy wants me to follow-up because of fluctuations in my blood pressure (one day 120/70, one day 150/100). I am hoping that I can regulate it with diet and exercise.
My hair is growing back in a way that is most disturbing. For the longest time my bangs didn't grow at all. I am unable to maintain any style at this point, and there is almost no use brushing my hair unless I have just stepped out of the shower since it seems to have developed a mind of its own. We have been doing the "trim around the ears and clean up the neck" at home hair care but one day I was out and saw someone in the street, dressed up in some animal costume, holding a sign up advertising a "Grand Opening" of a new Great Clips. They were offering haircuts for $2.99. Can't beat that. So I got my hair cut. Even though I brought pictures of what my hair used to look like, it still looks like I'm insane....sigh...but it is a little better. I have a coupon for $4.99 for May, $6.99 for June, and a $4.99 that never expires....so I'm set for a bit...
I have also taken other small steps. I went to a CPSP meeting (College of Pastoral Supervision and Psychotherapy) and really enjoyed reconnecting with colleagues and friends. I told my story about the "chaplain as patient" and red a few excerpts from the blog. I was able to speak in the JFK Place of Prayer during the noontime service and then met with the chaplain students to share stories. It was strange to be in the Place of Prayer - the last time I had been there was for my graduation 4 days before my diagnosis. I've worked at JFK for 27 years and yet I felt somewhat like a stranger there at first. I felt the same when I went into the office to see my patients. I had been doing phone sessions but now I am trying to alternate between phone sessions and in person sessions.
Now I am in search of a chaplain job. I have no idea when the next step will come and I am trying to stay positive and open to all possibilities. Fatigue is still with me, I am unable to tolerate the heat (or the cold for that matter), my moods are all over the place, I have joint pain every day and it is difficult to move around after 9pm....and, you can set your clock by my 11pm hot flash - bright red sweaty face.....I'm not complaining - I am just acknowledging that things are different. One of the reasons I am going to continue to blog is that what I have heard from other women is that this part of the process is when everyone thinks it is "time to move on because the cancer is gone and the treatment is over". While this is true, I am finding that physically and emotionally this is a difficult time especially because people want you to be better, to put this behind you and stop talking about it already...I had fallen into that trap myself by telling myself that I should be feeling better already! I have had to learn to be patient with myself and my body. That's an ongoing process and it is hard. My emotions, well, let's just say, they're another thing. Stay tuned - it has been very helpful for me to tell my story and to have you listen and share your thoughts with me. I've missed our chats.
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