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.
Wednesday, December 2, 2009
Of Course They're Fake, The Real Ones Tried to Kill Me...
Hope everyone had a happy Thanksgiving! I remember last year at this time...losing my hair, contemplating nesting for the winter with chemo and radiation ahead. This year is different in many ways but the gratitude is the same. I think that I am more conscious of just how sick I was with the chemo "day fives" and the pneumonitis from the Cytoxin, the size of the cancer in the one breast and then, surprise, another cancer (undetected) in the other. Last year I was aware of all this but I got through each day the best I could. It is only now when I have more energy and am out and about more that I am beginning to fully realize the impact that the cancer and the treatments have had on my life. I have new perspectives. I carry my experiences with me and in some ways they influence everything I do. I am not the same person I was before this diagnosis. (Although I may be even funnier than before...I'm just saying...)
I am hoping to return to work in the new year, but return where? I may be able to put some time in with the Sharing Network when I have enough stamina, I will continue to work with a few patients from the practice that I have been having phone sessions with, only now I will try to see them in person for at least one out of the two monthly sessions. But I am not sure where I am being led or what kind of work is out there waiting for me. That is frightening in this economy but it is also a little exciting. Maybe I will be able to work as a chaplain in an oncology practice close to home, maybe in a new hospital that is presently being built, maybe there will be an opportunity I haven't even imagined yet.
I have shared with some of you that I am reminded of that exercise that we "had to do" in so many of the psych classes I have taken...the one about trust. The one where everyone gets into a circle and the person in the middle has to close their eyes and let themselves fall backwards, trusting that the group will catch them and not let them fall. Not once was I ever able to do that. But I do think it is an important lesson to be able to give up some control - we really have the illusion that we have control over our lives. Life happens. I think that what we have control over is how we choose to respond to life experiences and how we choose to interact with one another. So giving up some control and trusting that I will not fall are
two of the life lessons that have come out of all this. What I couldn't do in a classroom I have learned to do with God. I trust that God will hold me up no matter what comes my way. I have chosen to respond with humor and reflection and prayer. This is not a linear process. It is very hard.
So we are now into Advent...once again life is about waiting, or maybe really about anticipation which is much more joyful. Yesterday was December 1st. Last year I was hospitalized for the pneumonitis on that date, 30 years ago on December 3rd my mother had her second mastectomy, but this year that date will be remembered as the date I had yet another surgery in this cancer saga.
To give you the short version, this surgery was to remove the "bricks" they call "expanders" and to replace them with silicone implants. There was also some other reconstructive work like fixing the ends of the scars on my back, etc. We left the house at 7a.m., arrived at Frankford (Aria) at 7:30 and I was in the OR by 8:30 and home by 3p.m. with 2 drains, a pain pump with a dilaudid chaser, and a new bra to be worn around the clock for the next 2 weeks. I met a man in the recovery room who sang every Christmas Carol he could think of while profusely apologizing to anyone who wasn't Christian, saw more exposed bodies than I cared to see, and "made suggestions " to the staff as to how they might improve their sensitivity to patients' needs...
Dr. Simmons stopped by to say hello and it was a good thing she was there. After Dr. Gottlieb had left, I got up to sit in a chair (mandatory if you want to go home) and my nurse noticed that my gown had "quite a bit of blood on it." She called Dr. Gottlieb and I would have had to wait some time for him to come back before I could be discharged but Dr. Simmons said that she would take a look to see where the blood was coming from. She determined that there had been some blood that had pooled and come out around one of my drains and that it was no big deal. She repacked everything and I was on my way. I'm having some pain - especially when I move my arms, but for the most part the pain pump and the dilaudid are taking care of that and I am trying to stay ahead of the pain. Today I have an appointment with Dr. Gottlieb at 3pm and if I feel up to it I may go to the midweek advent service/pasta dinner at the church. I also have another appointment on December 15th with Dr. Kennedy - but I will keep you up to day and take them one at a time.
If this post seems a little disjointed just remember that I am on the "good meds". I hope you all take some time for yourselves during this busy holiday season. Stop and reflect. Anticipate all the good things that are yet to come. Many blessings to all of you.
I am hoping to return to work in the new year, but return where? I may be able to put some time in with the Sharing Network when I have enough stamina, I will continue to work with a few patients from the practice that I have been having phone sessions with, only now I will try to see them in person for at least one out of the two monthly sessions. But I am not sure where I am being led or what kind of work is out there waiting for me. That is frightening in this economy but it is also a little exciting. Maybe I will be able to work as a chaplain in an oncology practice close to home, maybe in a new hospital that is presently being built, maybe there will be an opportunity I haven't even imagined yet.
I have shared with some of you that I am reminded of that exercise that we "had to do" in so many of the psych classes I have taken...the one about trust. The one where everyone gets into a circle and the person in the middle has to close their eyes and let themselves fall backwards, trusting that the group will catch them and not let them fall. Not once was I ever able to do that. But I do think it is an important lesson to be able to give up some control - we really have the illusion that we have control over our lives. Life happens. I think that what we have control over is how we choose to respond to life experiences and how we choose to interact with one another. So giving up some control and trusting that I will not fall are
two of the life lessons that have come out of all this. What I couldn't do in a classroom I have learned to do with God. I trust that God will hold me up no matter what comes my way. I have chosen to respond with humor and reflection and prayer. This is not a linear process. It is very hard.
So we are now into Advent...once again life is about waiting, or maybe really about anticipation which is much more joyful. Yesterday was December 1st. Last year I was hospitalized for the pneumonitis on that date, 30 years ago on December 3rd my mother had her second mastectomy, but this year that date will be remembered as the date I had yet another surgery in this cancer saga.
To give you the short version, this surgery was to remove the "bricks" they call "expanders" and to replace them with silicone implants. There was also some other reconstructive work like fixing the ends of the scars on my back, etc. We left the house at 7a.m., arrived at Frankford (Aria) at 7:30 and I was in the OR by 8:30 and home by 3p.m. with 2 drains, a pain pump with a dilaudid chaser, and a new bra to be worn around the clock for the next 2 weeks. I met a man in the recovery room who sang every Christmas Carol he could think of while profusely apologizing to anyone who wasn't Christian, saw more exposed bodies than I cared to see, and "made suggestions " to the staff as to how they might improve their sensitivity to patients' needs...
Dr. Simmons stopped by to say hello and it was a good thing she was there. After Dr. Gottlieb had left, I got up to sit in a chair (mandatory if you want to go home) and my nurse noticed that my gown had "quite a bit of blood on it." She called Dr. Gottlieb and I would have had to wait some time for him to come back before I could be discharged but Dr. Simmons said that she would take a look to see where the blood was coming from. She determined that there had been some blood that had pooled and come out around one of my drains and that it was no big deal. She repacked everything and I was on my way. I'm having some pain - especially when I move my arms, but for the most part the pain pump and the dilaudid are taking care of that and I am trying to stay ahead of the pain. Today I have an appointment with Dr. Gottlieb at 3pm and if I feel up to it I may go to the midweek advent service/pasta dinner at the church. I also have another appointment on December 15th with Dr. Kennedy - but I will keep you up to day and take them one at a time.
If this post seems a little disjointed just remember that I am on the "good meds". I hope you all take some time for yourselves during this busy holiday season. Stop and reflect. Anticipate all the good things that are yet to come. Many blessings to all of you.
Tuesday, November 24, 2009
A New Post...
Hi, it's been a long time...I didn't think too many of you were still reading the blog until I had a gap in the posts. Thank you for wanting to read more. The picture you see is me a little over a year ago, drumming at the Komen Race for the Cure. So much can happen in a year. I have a lot to tell you (duh) so let me begin with the facts.I left off shortly after the second cancer was discovered in my left breast (the "just in case" mastectomy...). Among the tests that were done on the tissue was an Oncotype Dx which is relatively new and used to predict recurrence and to assess the benefits of chemo. Since this was a new primary we couldn't generalize from the other cancer. With the other cancer we didn't have to do this test because chemo was indicated by its size (8.5 cm) and staging (Stage 3). Anyway, good news! I scored low for the recurrence of the second cancer so we are not doing chemo right now and we will proceed with the hormonal therapy. Yippee!! SO SO happy - you have no idea!
So, I was on Tamoxifen for about a month and when I saw Dr. Kennedy she was satisfied that I was in menopause so she gave me a break from Tamoxifen while I got a bone density scan. Then I began Femara. I did not have any side effects from the Tamoxifen that I knew of (I always have hot flashes that turn me bright red and drench me...) but the possibilities included blood clots, DVT, etc. and I am happy to be moving on. The Femara seems to be ok and the big risk with this drug is bone loss, osteoporosis, and possibly "bone, joint, muscle pain". Dr. Kennedy says that sometimes this gets bad and folks have to be changed to another med but so far so good. Maybe this is because I have a high pain tolerance or maybe it's because I have just gotten a little used to having pain in my shoulders and knees, or getting out of bed or standing up slowly, or not being able to carry heavy objects, etc. Healing takes time and sometimes compromise. So now I am taking Levoyxl, Zocor, Zettia, Femara, a multivitamin, Co-Q10, Calcium and Vitamin D3, Glucosamine, and whatever other analgesics, etc are needed in a day.
Moving right along, let me just say one thing about the "expansion" process....it is not pretty...I explained this process in the last post so I am not going to go through it again here. Let me just say that the side with just the expander is fine...you go through the expansion, some minor discomfort and then you can have the expander surgically removed and the silicone implant inserted (which hopefully is softer than the expander which I can only describe as .....do you remember the hard plastic cosmetic bags that you can get at the dollor store? or Newberrys if you are my age...) Now, the other side....is another story. My right side has the Dorsi flap from my back..remember the muscle, blood supply, etc. being pulled under the skin under my right arm to create a flap where the radiated skin was removed? That was fun. Anyway, the expander on that side is under muscle which doesn't like to stretch and expand...neither does the muscle under my arm or on my back. The expansion process on this side was more difficult for me because it was painful - usually for a day or two after expansion but the last expansion was very painful for about a week. Today is two weeks since the last expansion and I can say that I am feeling okay but not great. Because of the pain I don't move my arm as much and I have to force myself to do this or my shoulder has more pain. Knowing what I know now, if I had to do it over again, I would have to think long and hard before I would consider reconstruction with a flap. I am sure they will look fine in the end...but who cares? I am much more than my boobs. I just didn't want to deal with prostheses...but who said I'd have to? Every woman has the right to make whatever choices are right for her. I guess I just don't have strong feelings one way or another. I just want the pain to go away and my mobility to increase. Little by little.
The big day is next Tuesday, December 1st. Out with the "hot pockets" in with the silicone. I'll let you know when I have a time. Today I have to go get my port flushed and pre-op bloodwork drawn. Then I have to go to see Dr. Gottlieb for my pre-op visit. With all of this going on I thought it was funny that I experienced a little dread at going to the eye doctor last week...I was actually whining (!) "I don't want to have my pupils dialated..." I am looking forward to some peace in the weeks following this surgery.
That is what has been happening here. If I've left anything out I will insert it in some awkward place in a future post. I'm going to end this post here and I will continue with further reflections in my next one....coming soon....maybe even by this evening! Thanks again for asking me to continue with the blog.
Thursday, September 10, 2009
Water Balloons and Cancer Cells
Shall I talk about water balloons or cancer first....hmmm...well, let's talk about cancer because I don't really know too much more than when we last spoke. I did talk to Dr. Kennedy on Tuesday, September 8th, the day after Labor Day. She is going to run one more test on the tissue and then we will set up an appointment in a week or two. She said that this cancer is another "primary" which means that it did not spread from my other cancer or anywhere else. She also said that this cancer did not develop after chemo stopped - it has been there throughout treatment - the chemo may have decreased its size or it just may not have responded to it. There are so many things to consider and I have a lot of questions but I feel confident that they will be answered. The problem is that I am not feeling very patient at the moment. Dr. Kennedy is going to go through my whole chart, scans, bloodwork, etc. from the beginning. She says she needs a little time to "chew on this" and, God-willing, I'm not going anywhere - so chew.
I will also see Dr. Simmons at some point and I am going to ask her to look at my MRI again. I have no doubt in my mind that she has already done this but I just want to see for myself. You remember way back when, when the radiologists everywhere read all my scans as negative? Well, Dr. Simmons was able to look at my MRI herself and she read it as positive. She saw the cancer in the right breast even though we were all surprised at just how much cancer there was. (8.5 cm). I know she looked at the left breast too, but maybe now that we know exactly where the cancer was (in what quadrant) in the left breast, we can see if there was any evidence at all of its existence when that scan was taken. Not that it makes any difference to anyone but me. Having seen it then wouldn't have changed anything in terms of the way my treatment has progressed.
Now on to water balloons. (saline balloons?) I've had weekly appointments with Dr. Gottlieb since the surgery (with the exception of this week). On Tuesday, September 1st we began the expansion process...Dr. Gottlieb moves magnets over the expanders and then marks "the spot" by making a little "x" on my skin with his sharpie. Needles are put into the expanders and they are filled with saline until you can't take it anymore....(just kidding, the actual phrase is "Let me know when you've had enough" ) He said that he would only fill them up to a certain amount anyway so that I wouldn't call and yell at him the next day. The side with the dorsi flap from my back (aah, I bet you already forgot about that didn't you? Well I can assure you that I haven't) took more saline than the other side did. This is normal and I am told that I will be amazed at how all this is going to look at some point in the future. Uh huh.... right now besides healing tissue and healing scars I also see the turquois tatoos (I really meant tatoos) from radiation, and now I have 2 little x marks the spots. Very attractive. Like a treasure map... but Dr. Gottlieb has shown me photos of his work (some have scared me but most have inspired me) and I trust him when he says, "Trust me". Call me crazy. All I know is that I'm alive to tell about it and that is all that matters to me. Really. I am not kidding. So I'll go back for some more of this fun in two weeks... There was a woman in his office that had a great T-Shirt on that said, Of Course They're Fake, the Real Ones Tried to Kill Me. I may have to get one of those T-Shirts. That, and My Hairstyle is Compliments of my Oncologist. It really looks crazy now. If I had some fig leaves I could be Nero...
It's cool today, very fall-like, and I am reminded that soon the Dairy Queens will be closing for the season again (except for the ones that Tracy told me about). Time flies whether you're having fun or not. But, all joking aside, I can't believe that I have spent over a year of my life doing this. Luckily it has not only been this, it has been so much more. It has been full. I have been filled - with hope and faith and promise and love. And also with sadness and anger and loss and grief. As I said, full. When I look back I don't think that I would ever have the energy or strength to do that again, but if I knew what this next year holds I would probably say the same about that. And I will get through this next year. Whatever it holds. I know that. I've learned that. Day by day....sometimes hour by hour. The strength comes. The "healing" comes - sometimes physical, sometimes emotional, sometimes spiritual. I like it best when it is all three at once - which is extraordinarily rare. There are moments when you really do feel surrounded by the "white healing light which is the love of God". And I am grateful for the people who continue to walk with me and hold me up when I am too tired to do it myself. I thank you all.
So now I have to nap. I can whine and try to stay awake but that is not pleasant. I find that when I am really tired and ready to go to sleep for the night I am very funny. I have this stream of consciousness, running monologue thing going. I need to get one of those DVRs (Digital Voice Recorders) It'll be good for the book...or it will give the editor a good laugh before he/she slashes away at my words. Anyway, more later...feel free to share your own stuff...
I will also see Dr. Simmons at some point and I am going to ask her to look at my MRI again. I have no doubt in my mind that she has already done this but I just want to see for myself. You remember way back when, when the radiologists everywhere read all my scans as negative? Well, Dr. Simmons was able to look at my MRI herself and she read it as positive. She saw the cancer in the right breast even though we were all surprised at just how much cancer there was. (8.5 cm). I know she looked at the left breast too, but maybe now that we know exactly where the cancer was (in what quadrant) in the left breast, we can see if there was any evidence at all of its existence when that scan was taken. Not that it makes any difference to anyone but me. Having seen it then wouldn't have changed anything in terms of the way my treatment has progressed.
Now on to water balloons. (saline balloons?) I've had weekly appointments with Dr. Gottlieb since the surgery (with the exception of this week). On Tuesday, September 1st we began the expansion process...Dr. Gottlieb moves magnets over the expanders and then marks "the spot" by making a little "x" on my skin with his sharpie. Needles are put into the expanders and they are filled with saline until you can't take it anymore....(just kidding, the actual phrase is "Let me know when you've had enough" ) He said that he would only fill them up to a certain amount anyway so that I wouldn't call and yell at him the next day. The side with the dorsi flap from my back (aah, I bet you already forgot about that didn't you? Well I can assure you that I haven't) took more saline than the other side did. This is normal and I am told that I will be amazed at how all this is going to look at some point in the future. Uh huh.... right now besides healing tissue and healing scars I also see the turquois tatoos (I really meant tatoos) from radiation, and now I have 2 little x marks the spots. Very attractive. Like a treasure map... but Dr. Gottlieb has shown me photos of his work (some have scared me but most have inspired me) and I trust him when he says, "Trust me". Call me crazy. All I know is that I'm alive to tell about it and that is all that matters to me. Really. I am not kidding. So I'll go back for some more of this fun in two weeks... There was a woman in his office that had a great T-Shirt on that said, Of Course They're Fake, the Real Ones Tried to Kill Me. I may have to get one of those T-Shirts. That, and My Hairstyle is Compliments of my Oncologist. It really looks crazy now. If I had some fig leaves I could be Nero...
It's cool today, very fall-like, and I am reminded that soon the Dairy Queens will be closing for the season again (except for the ones that Tracy told me about). Time flies whether you're having fun or not. But, all joking aside, I can't believe that I have spent over a year of my life doing this. Luckily it has not only been this, it has been so much more. It has been full. I have been filled - with hope and faith and promise and love. And also with sadness and anger and loss and grief. As I said, full. When I look back I don't think that I would ever have the energy or strength to do that again, but if I knew what this next year holds I would probably say the same about that. And I will get through this next year. Whatever it holds. I know that. I've learned that. Day by day....sometimes hour by hour. The strength comes. The "healing" comes - sometimes physical, sometimes emotional, sometimes spiritual. I like it best when it is all three at once - which is extraordinarily rare. There are moments when you really do feel surrounded by the "white healing light which is the love of God". And I am grateful for the people who continue to walk with me and hold me up when I am too tired to do it myself. I thank you all.
So now I have to nap. I can whine and try to stay awake but that is not pleasant. I find that when I am really tired and ready to go to sleep for the night I am very funny. I have this stream of consciousness, running monologue thing going. I need to get one of those DVRs (Digital Voice Recorders) It'll be good for the book...or it will give the editor a good laugh before he/she slashes away at my words. Anyway, more later...feel free to share your own stuff...
Monday, August 31, 2009
Waiting...waiting...waiting...
The status on my Facebook right now says, "If you can laugh at it, then you can live with it." In my opinion, this is one of Erma Bombeck's gems. (of course my cousin Kathy's immediate response was "that's the way I think about Pete" her husband.)To me humor has always been a saving grace. I grew up in a family that uses humor not only to cope and heal, but to celebrate life as well. We laugh at anything and everything. Sometimes this is disconcerting to those who do not know us well. I think I mentioned in an earlier blog that my cousin Joey had his kidney removed due to cancer many years ago. Of course that word raises all kinds of anxiety but when I brought him a can of kidney beans when I went to see him in the hospital we laughed, the tension broke, and we were able to talk. Shortly after my diagnosis I was talking to Joey on the phone and he said that he had a gift for me. Comfy socks? Healing CDs? Aromatherapy hand lotion? Nooooo....two cans of evaporated milk.
This is the family I come from. And I wouldn't have it any other way. I like shouting over each others' voices to be heard when telling family stories and having at least 2 people tell different versions, and then laughing until your stomach hurts. Some stories are just plain funny, and others are of the "you had to be there variety". My cousin Margaret and I can laugh until we cry when we hear someone say, "Here today, gone tomorrow," because under totally inappropriate circumstances (as her aunt was being taken away in an ambulance) Margaret's mother nonchalantly commmented, "Well, here today, gone tomorrow."
But I have to say that my mother is the most naturally funny person I know. Anyone who has spent any time with her at all knows this to be true. It is not just that funny things happen to her (all the time), but she can tell a story with perfect timing and facial expressions that put her in league with Lucille Ball and Gracie Allen, and Carol Burnett. I'd like to share one of my favorite stories that took place quite awhile ago. I am sure that it will lose something in the translation by writing it down but....years ago my parents took the bus into New York with their friends Doris and Frank to see a Broadway show. My mother always has to go to the bathroom and knows where they are in each and every supermarket, mall, bookstore, and department store on the east coast, so she thought she would go to the bathroom before leaving Port of Authority. Her friend Doris came with her and looked somewhat uncomfortable. My mother asked her what was wrong and she said that she didn't have any change. This was in the day when public bathroom stalls would be locked with big silver change machines and if you did not have a dime you were not going to get in. My mother, however, knew that they were doing away with this practice and that most of the coin machines had been disabled. To reassure her friend she said, "Don't worry Doris, you don't need change anymore." And with that she demonstrated by opening one of the stall doors and then closing it, opening it and then closing it, saying, "see?" .....until she heard the small voice of a little old lady sitting on the toilet bowl saying,"Could you please stop doing that." My mother stopped in her tracks, opened the door looking directly at this poor old woman. After apologizing profusely, she and Doris had to run out of the bathroom and look for another one...
Why am I telling you these stories? I don't know. Because they make me laugh? Maybe. But I think that they are the stories of survivors. I am waiting ...waiting...waiting...for who knows what. But while I am waiting and worrying, and picking out the music for my funeral service (just kidding...that's been done already) I am also remembering, and sharing stories and laughing. They make the waiting go by much quicker and I think that this is the best part of life anyway. I really believe that humor, in any form, and a positive healing attitude and environment can do wonders.
One last story. (for now) When I was 10 years old my mother was first diagnosed with breast cancer and had her first mastectomy. She had radical surgery that was different from what we know today so it took longer to build up her arm muscle to lift her arm over her head, etc. I remember her standing next to a wall and using her fingers to creep up as high as she could go to strengthen her arm. One day, not too long after my mother came home from the hospital, my father put us all in the Rambler (a car for those of you too young to remember) and we headed off to Sears. My mother asked my father where we were going and he told her that we were going to Sears to buy a dryer so it wouldn't be so difficult for her to have to hang all the clothes on the line. My mother burst into tears and none of us knew what to make of it. Through sobs she said, "I must be dying, you would never spend that kind of money." So, my father promptly pulled the car over to the side of the road and was going to turn around and go home. My mother said, "You'll really go home?" He said, "Absolutely, I don't want to upset you or have you think you're dying or anything...I just wanted to make things a little easier for you." To which my mother replied, "Then let's go to Sears before all the good sales are over!"
Who knows what is ahead for me but you can be sure that I am not going to stop telling the stories and I will never turn down the offer of a large appliance....even if I am dying....
Thanks for helping me get through this afternoon's wait. The visit was very enjoyable. Talk to you soon.
Thursday, August 27, 2009
So....
Hi, I'm home from the hospital. I had 5-6 hours of surgery on Tuesday August 11th and I was home by dinner on Thursday August 13th. My doctors thought I was doing great and that pain management was the main objective (next to watching for infection) and they said that I didn't need to be around sick people anymore so they let me go. I have to say that the pain has been difficult. It can be managed with dilaudid and valium until I try to skip a dose. Just in the past few days I've been able to stretch out the timing on my pain meds. I guess it will just take time. I can't compare to last time because they were two very different surgeries.
Colleen, Susan, MaryLou, and Colleen's mother, Carolann, all coordinated schedules so that they could take care of me (there are certain things that I cannot do alone) and make sure that I was not alone for the first couple weeks. That was no small task considering that people have to work, Rebecca was moving into college and Susan was getting ready for a trip out west to see her brother George, etc. Olivia was also a big help, and the visits from Kara, Ashley and Casey, complete with Wawa chocolate milkshakes and Rita's Swedish Fish water ice, certainly kept me laughing (Thank you for that additional pain...)
I know I heal well, I'm just not feeling well at this point. I have seen Dr. Gottlieb weekly and apparently that is the way it is going to be for awhile. He is happy with the surgery and the way I am healing. Colleen took out my three pain pumps by the end of the first week, and Dr. Gottlieb took out all four drains shortly after. There was a little fluid buildup on my back and Dr. Gottlieb aspirated that in his office. I am taking lots (to me) of meds and vitamins, and I was given an antibiotic for a week before we will attempt the first expansion....yippee....
I was able to see Becca's dorm, watch Phineas and Ferb with Olivia (by the way, for those of you who are familiar with this cartoon, the one with the triangle head looks like he is trying to get out of my back...), and keep myself occupied with Facebook. Reading isn't an option right now because I can't concentrate yet.
That's the good news. And then we got the the results of the pathology report. It was positive for cancer. That was a surprise. Dr. Simmons called to tell me the news and said that she waited 2 hours to call me because she not only spoke to the pathologist, my oncologist Dr. Kennedy, and Dr. Gottlieb, but she also had to take some time to compose herself because this was just not what any of us were expecting. It meant alot to me to know that it was difficult for her too. I have the best team.
I don't really know what this means in terms of treatment, prognosis, or recurrence statistics but I am very grateful that I chose to go with the other mastectomy "as a precaution". This is a scary time. I thought I was turning the corner...you know, mastectomy, reconstruction, Tamoxifen, Femara, maybe back to work, apppointments and scans every three months or so...and then this. Another reminder that I have no control over the cancer or any of this. I would be lying if I said that I haven't thought of the worst case scenarios, but I also know that my doctors will do their very best to help me heal. Dr. Kennedy called the other day and told me that when they have all the information they need, we will have a team meeting to discuss options. I will let you know when we do.
Until then, keep praying and I will continue to pray for you.
Colleen, Susan, MaryLou, and Colleen's mother, Carolann, all coordinated schedules so that they could take care of me (there are certain things that I cannot do alone) and make sure that I was not alone for the first couple weeks. That was no small task considering that people have to work, Rebecca was moving into college and Susan was getting ready for a trip out west to see her brother George, etc. Olivia was also a big help, and the visits from Kara, Ashley and Casey, complete with Wawa chocolate milkshakes and Rita's Swedish Fish water ice, certainly kept me laughing (Thank you for that additional pain...)
I know I heal well, I'm just not feeling well at this point. I have seen Dr. Gottlieb weekly and apparently that is the way it is going to be for awhile. He is happy with the surgery and the way I am healing. Colleen took out my three pain pumps by the end of the first week, and Dr. Gottlieb took out all four drains shortly after. There was a little fluid buildup on my back and Dr. Gottlieb aspirated that in his office. I am taking lots (to me) of meds and vitamins, and I was given an antibiotic for a week before we will attempt the first expansion....yippee....
I was able to see Becca's dorm, watch Phineas and Ferb with Olivia (by the way, for those of you who are familiar with this cartoon, the one with the triangle head looks like he is trying to get out of my back...), and keep myself occupied with Facebook. Reading isn't an option right now because I can't concentrate yet.
That's the good news. And then we got the the results of the pathology report. It was positive for cancer. That was a surprise. Dr. Simmons called to tell me the news and said that she waited 2 hours to call me because she not only spoke to the pathologist, my oncologist Dr. Kennedy, and Dr. Gottlieb, but she also had to take some time to compose herself because this was just not what any of us were expecting. It meant alot to me to know that it was difficult for her too. I have the best team.
I don't really know what this means in terms of treatment, prognosis, or recurrence statistics but I am very grateful that I chose to go with the other mastectomy "as a precaution". This is a scary time. I thought I was turning the corner...you know, mastectomy, reconstruction, Tamoxifen, Femara, maybe back to work, apppointments and scans every three months or so...and then this. Another reminder that I have no control over the cancer or any of this. I would be lying if I said that I haven't thought of the worst case scenarios, but I also know that my doctors will do their very best to help me heal. Dr. Kennedy called the other day and told me that when they have all the information they need, we will have a team meeting to discuss options. I will let you know when we do.
Until then, keep praying and I will continue to pray for you.
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