boobie trap

ONE YEAR CANCER FREE!

2010-08-16T18:09:00.000-07:00

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....

When Did It Become 2010?

2010-05-13T10:59:00.000-07:00

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.

Of Course They're Fake, The Real Ones Tried to Kill Me...

2009-12-02T08:56:00.000-08:00

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.

A New Post...

2009-11-24T06:45:00.000-08:00

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.

Water Balloons and Cancer Cells

2009-09-10T09:28:00.000-07:00

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...

Waiting...waiting...waiting...

2009-08-31T09:53:00.000-07:00

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.

So....

2009-08-27T06:33:00.000-07:00

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.

Bye Bye Back Up Boob, Let's Start From Scratch...

2009-08-21T06:29:00.000-07:00

So August 11th came and the morning was nicer weatherwise than had been expected. The night before, after my shower, I had to use antiseptic prep washes to make every effort to avoid infection. The morning of the surgery I had to use them again. I was glad that I was the first surgery on the schedule and a little anxious to get things moving. I woke up at 5 am and after throwing on my "I Fight Like a Girl" Breast Cancer Survivor T-Shirt, we headed for Frankford Torresdale (now known as Aria.....)We were giving information at the admissions desk at 6am. Sue and Col and I went to an area called "Observation" and there they asked me more questions, took vitals and weighed me. Within minutes someone from the OR came for me with a wheelchair. Once I was upstairs everything went quickly. I met my nurse, nurse anesthetist, a student who was going to watch, and my anesthesiologist (which thanks to Dr. Simmons intervention was NOT going to be the same one from last year who blamed me for not being able to get an IV and who became incensed when I said that "Gay" didn't mean "Happy" when he insisted on a pregnancy test and told me that I could become pregnant until I was 60! )

They started my IV through my port which was great, and then moved it to my hand once I was in dreamland in the OR. I saw Dr. Gottlieb who drew all over my front and back. He said that he was the "opener and the closer" for this surgery and that I wouldn't see Dr Simmons until probably the next day. Even though the mastectomy was being done as a precaution, the pathology department would examine the tissue to make sure that everything was fine. I said goodbye to Sue and Colleen and that was the last thing I remember until I woke up in the recovery room. It couldn't have gone smoother.

In the recovery room I remember two things: asking for ice chips repeatedly, and asking what time it was repeatedly. I went into the OR at 7:30am, the clock on the wall should not have said 2pm. Apparently when Dr. Gottlieb saw Sue and Col before surgery and said to them, "Don't expect to hear anything for at least 4 or 5 hours," they turned to each other and said, "Did you know the surgery was going to take that long?" Just a little detail...I had morphine in the recovery room and then was moved to a room on the third floor. I had 3 indwelling pain pumps and 4 drains in addition to my IV. I bought this way cool vest for them but there will be more about that in the next post.

The pain was managed with morphine and percocet at first but then the percocet was changed to valium which helps to relax the muscles that were all pulled out of place. I have to say that for the first 2 days, pain management was my biggest issue and I have a very high pain tolerance. Within the first four hours in my room I was disappointed/outraged by only two things. First, there was NO green jello. Just orange or cherry. Unaccceptable. And two, whenever I tried to lean forward (which wasn't often since this was a painfull process) I felt as if my skin was peeling off something plastic. Who knows? I just ate my orange jello and kept my mouth shut. But then, about 4 hours later, I had to go to the bathroom, so I was helped to the bedside commode by the green team and I looked over at my bed and said, "hmmmm, no one ever removed my transfer board." For those of you who do not work in healthcare, a transfer board is a hard plastic board used to move patients from stretchers to beds,etc. AND THEN TO BE REMOVED. In my case since it was not removed and I was in a semi-sitting up position, the board had conformed (somewhat) to my body and was a twisted wreck. I thought this was pretty funny (perhaps drug-induced humor) and I was happy to be more comfortable once I got back into bed. Dr. Simmons did not think this was funny at all so it probably wasn't. She usually has a pretty good sense of humor.

A funny thing did happen the first night of my admission though. I was not allowed out of bed by myself for obvious reasons. I was 2 doors down from the nurses station so there was a lot of noise around me. My nurse shut the door so I could sleep (and hermatically seal me off from all contact with the outside world). At some point I dropped my call bell on the floor which didn't really bother me until I (1)Needed pain meds and (2)Needed to go to the bathroom. There was no way I was getting this call bell back. What would MacGyver do? Hmmmm. I thought about creating a fishing line from the cord that turns on my light but I was not physically able to reach behind me...then I thought about tying a pillow case to the handle of a water pitcher and try to retrieve the call bell that way. Clearly MacGyver had never had bilateral mastectomies with reconstruction including a right dorsi flap option....What next???? I pulled my overbed table toward me ever so gently until I could reach my cell phone. The problem here would be that I had not turned my cell phone on in four months and the reception around the hospital is spotty at best. Since Susan works at Torresdale I knew the main number by heart and the conversation went something like this: Hello, my name is Susan Bamburak (slurred due to sleep and meds), and I am admitted on the third floor of this hospital. I don't know what room - it is dark and I can't turn the light on because I just had surgery. I dropped my call bell and I was wondering if you could look me up in the computer and connect me to the nursing station on my floor.......what????....because I have to go to the bathroom and I am in pain...thank you...When my nurse got on the phone she couldn't stop laughing but she came right in.

Anyway, both Drs. Simmons and Gottlieb were happy with the way the surgery went and the way (in this short time) it seems to be healing. Tune in later for a visit from Kara, Ashley and Casey, a critique on the new "Swedish Fish" flavored water ice, and pathology reports: friend or foe. Thank you for responding to my request to post your responses. Later.

From Uniboober to Bionic Boobs....

2009-08-07T07:37:00.000-07:00

"We can rebuild her, we have the technology, we can make her stronger, faster, thinner." Ahh, fond memories of Lindsay Wagner. For those of you who don't get the reference (ie. Kara Mullican and friends - I know you like to be mentioned in the blog) it is probably better that way.

Well, it is a spectacular Friday morning as I write this. I am hoping that a spontaneous trip down the shore will actually happen later today. I have my surgery scheduled for next Tuesday, August 11th at 7:30am. I am the first "case"on the schedule. It is an odd feeling for me. It's not like I didn't come through the first surgery with flying colors...I have always counted on my body to come through the surgeries I've had and I've never had a problem so I don't anticipate any now. It's just different. Maybe it's because my body has been through so much this year, maybe it's because I am tired (!), maybe it's because I have had more time to think about the surgery (which is much more involved than the last one), or maybe it is just that I am losing my only remaining breast (my back-up boob...).

Now don't get me wrong - I have good feelings about this surgery, I think it's just that I want it to be over already. I want to be healing, have the next surgeries, and be healing, and then I want to go back to my life with only tests and doctors appointments every three months to look forward to...

Here is what's happening (I have to warn you that some of this is not for the squeamish). I've started Tamoxifen (later than expected due to sinus infection), and I will be on that until some time in the fall when Dr. Kennedy is satisfied that I am in menopause. Some concerns here are that some of the possible side effects are uterine cancer, DVT, blood clots, stroke, etc. but it is better than recurrence so on to the next. (and if you really think about it, those are the possible side effects of birth control pills too) Then I will switch to Femara for about 10 years. The Femara will not work unless I am in menopause so that is why we are starting with Tamoxifen.

My CAT Scan (as reported earlier) showed that the pneumonitis has resolved, and my PET Scan is clear. I have had all my pre-admission testing bloodwork, ekg, etc. and I had my last appointment with Dr. Gottlieb before surgery on August 4th at 2pm. He went over all the details of his part of the surgery and follow-up again and I signed all the consents. Susan, Colleen and I asked a million questions. I told him that I won't know if I'm coming or going. (that is a punch line that will only make sense after you read about the surgery)

So this surgery is a 2 parter. First, Dr. Simmons will do a left mastectomy. That should take about an hour. Then Dr. Gottlieb will begin the process of reconstruction. Initially (last year) I thought I was going to go with the abdominal flap but I have rethought this, as major abdominal surgery at this time is just too much stress on my body. I had planned to have implants but you know what they say about the best laid plans.....Well, I shouldn't say that - I am having implants it is just that due to the radiation to my right side Dr. Gottlieb has opted to remove all that skin and take skin, muscle, and blood supply from my right back and shift it, under the skin, under my right arm until it is covering my right chest wall. He will make that into a flap and insert an expander. The other side (where Dr. Simmons will have just finished the mastectomy) will be easier - Dr. Gottlieb will just insert the expander. Essentially, on my right side, part of my back will become part of my boob - hence - (punch line) I won't know whether I'm coming or going...He said that in some cases he has to take the skin from the butt and that causes all sorts of other punch lines but I'm glad that we are not going there "la la la la". He says that he will start the expansion process two weeks after surgery. He will inject saline into the expanders which will expand the skin. This will be done a few times and then more surgery to replace the expanders with silicone implants and create nipple and areola. But I'm getting ahead of myself. When I come out of surgery I will have 2 drains in my back and drains on each breast. I will have 2 pain pumps this time. I am thinking that I will have to experience all this before I can report it to you accurately. Strangely, the thing that bothers me most is that I have this bilateral tentonitis in my wrists which is very painful. I am concerned about how much I will be able to do for myself in the early weeks of recovery.

But today is a beautiful day and I am heading down the shore. For a few hours this will all be out of my mind (really- to you who doubt). Pondering what it was like for my mother to have her second mastectomy, or what the next week will bring will be put on hold for awhile while I enjoy - just being. So while I may write again before surgery - (ponderings, remember?) more likely than not I will be back after surgery - which - oh, by the way, Aetna pre-certed 7 (!) days in the hospital (Torresdale again...now known as Aria Healthcare...don't get me started) 7 days is unheard of. I predict 3 or less....Gottlieb says about 5 maybe 4....we'll see.

I feel all of you with me, please continue to keep me in your prayers and even though I see you or you call, e-mail, facebook, etc. - if you get a moment, leave a comment on the blog. I like reading them here. Thanks.

Talk to you later.

Hair we go again!

2009-07-07T09:05:00.000-07:00

Well hello, hope you are all having a nice summer in spite of the daily rain. I can't believe that next month will be a year since my diagnosis! And I'm not done yet...

My radiation burns have healed and I have more energy. This picture was taken at Becca's graduation and I am so happy that I have been able to share in some happy times like awards night and graduation parties, BBQs. Sue and I were even able to attend the Princeton Seminary graduation to see Amy, Grier, and Leigh get their MDivs. The ceremony was so beautiful and it was just meant to be. We showed up on the doorstep of the Chapel (without tickets!) and I was pondering what to do next. When I looked up I saw Amy. I hadn't seen her since right before surgery so it was an emotional reunion. Within minutes she had tickets for us and we got to be present for this moment. I am only sorry that I was unable to make the trip to Indiana for Jon and Amy's wedding over the 4th of July, but from all accounts on facebook - it was spectacular!

One is only allowed to heal for so long before the medical profession finds you and decides that it is not over until it is over... So on Monday, June 29th I had a CT scan to check on the pneumonitis at 8a.m. at Aria Bucks. In case you're wondering what I'm talking about, Frankford Hospital (Torresdale and Bucks campuses) is where I have had all my treatment. At some point, they decided to change their name to Aria Health System. The name apparently is arbitrary and "doesn't mean anything" so I say - don't change it... It is hard to say and should only be used in operas...

Monday afternoon I had an appointment with Dr. Simmons (breast surgeon). My team (Col and Sue) came with me as usual. It was good to see her again. Unfortunately when she asked me about my "summer cold" (that had lasted 2 and a half weeks and settled in my ear...) she started me on levaquin and made and appointment for me with an ENT, Dr. Gabay...my first sinus infection...I'd been off bactrim for what? A week? We also discussed the surgery and I came away with scripts for pre-op testing and preps. If all goes well and I can get rid of this sinus infection, I will be having a mastectomy on my left side with bilateral reconstruction on August 11, 2009. Dr. Simmons was able to pull up the results of my CT scan and I am happy to report that the pneumonitis has resolved (cleared).

Since Dr. Simmons was pretty clear that she wanted me to start the levaquin that night and not the next day when she had scheduled my appt with Dr. Gabay, we had to have the prescription filled at CVS and not Aria pharmacy (since it was after 5 and closed). Co-pay of $60!!! vs. $15...hmm. Anyway, on Tuesday, June 30th, we went to see Dr. Gabay at 7p.m. The good news is that we already knew where his office was (not me of course, no sense of direction...) since he is in practice with Dr. Gottlieb, my plastic surgeon. I'm thinking ENT/Nose Job. Interesting bunch of patients in the waiting room. Sitcom written all over it. We had to wait a bit so I spent the time trying to figure out which patients were there to have their makeup tatooed on... and oh, I forgot to mention that I have bilateral tendonitis that is affecting my wrists so I was unable to remove my own health insurance card from my wallet (don't worry, it's getting better and I am alternating my braces which helps). When we were called into the examining room we had another wait. The three of us were amazed as we watched one of the staff dump all the metal equipment she could find into one small sink in the room we were in. I am hoping that this was just a "stopover" on the way to autoclave... When Dr. Gabay did come in with his fellow, he was very nice and saw fluid in my middle ear...requiring prednisone, claritan, nasonex, levaquin....he wants to see me when it clears and do a hearing test. I said that I had an appointment scheduled with Dr. Gottlieb for Monday, July 6th, but he said that it would not be cleared by then...and the only thing that kept going through my head was, "Calling Dr. Gabay, calling Dr. Gabay, come right away.." as if I was in an old episode of Bewitched. (And yes, Kara Mullican, I am well aware that you have no point of reference for all my Bewitched comments).

So, are we up to Wednesday July 1st yet? I was scheduled to have my PET scan at 7:45a.m. (first appointment - YES!) The trailer moved from the ER parking lot to the parking lot right in front of the out-patient entrance. The PET scan can show (sometimes) if the cancer has spread, but I have come to find that it is not as good at showing a new primary. Since I have had 2 other PET Scans I knew what to expect and I was a little anxious this time for different reasons - none of which had anything to do with cancer. First, I was concerned about the techs finding a vein to inject the radio-active material. Last time it was not an easy process. I ate high protein/low carb diet, drank more water than any human should ever have to, and still... This concern was further amplified by the fact that it is painful to turn my arms/wrists (tendonitis). I had asked if my port could be used (and the answer is YES, it can) but the nurse had so many reasons why she didn't want to do that that I asked her to check for a vein first. She got it in my hand first try and it was perfect! (When I went to the chemo room after the scan to have my port flushed, the nurses there rolled their eyes and said that when I have another PET scan to come to them first and they will access my port for me...) My second concern was that fact that I didn't want to choke during the test. Draining sinus infection, laying still flat on back for 45 minutes....hmmmm. But I was fine. This is the test where you have to spend an hour in a dimly lit room with a blanket before you get scanned, and then you are scanned in 6 "slices" for 6 minutes each. I have always found this to be a time of prayer for me and have felt held and surrounded by God. It is very peaceful. I have not gotten the results back yet but our phone message system at home has been messed up and we are still waiting for Verizon to fix it. I am not in a hurry for these results but if I don't hear from Dr. Kennedy soon I may consider calling her at some point.

On Monday, July 6th at 2:20p.m. I had an appointment with Dr. Gottlieb to talk about his part in the upcoming surgery. Originally, right after diagnosis I was considering the option of using an abdominal flap for reconstruction - for many reasons. Now, however, I have opted for the expanders and silicone implants. My body has been through alot this year and not only am I not up for the strain and recovery of major abdominal surgery, but that kind of surgery can be done only once and I am preserving all my options. Consideration has been taken in case the pathology report on my left breast comes back positive and also in case of recurrence requiring further treatment. That being said, the surgery is turning out to be more involved than I expected. Because I had alot of radiation to my right side, Dr. Gottlieb is going to use some skin/muscle from the right side of my back to create a flap for the expander/implant. He was impressed with how good my skin is after reading the reports, but he feels that the radiation interferes with the skin's pliability. (I know this is more information than you ever wanted to know but I'm almost done with details) After Dr. Simmons is done with the mastectomy, he will create the flap, and put in the expanders. I will have 4 drains this time and be wrapped up like a mummy. He says that I will be in the hospital for 3 or 4 days...I'm thinking...no....I was out in less than 24 hours last time so that I could go to Sue's Nursing School graduation...MAYBE I will be there 2 or 3 days...Then I will see him frequently over the next 4 months or so until I can have the next surgery....and more (but I don't want to ruin the surprise...so keep reading)

I think that is enough to write right now. I hope to blog more regularly so that I don't have too many of these "marathon" entries. Thank you for continuing to follow my story - it means alot. Talk to you soon. Enjoy the summer.

Helloooooooo....

2009-05-24T05:52:00.000-07:00

Okay, I started writing about radiation on April 5th, then stopped and wrote about getting eyebrows on April 22nd. Now I finished this post on MAY 24th but it is posting on April 5th so it doesn't look like I've written anything new....please go back to April 5th and read it....thanks.

Guess what I got for my birthday? Eyebrows!

2009-04-22T11:10:00.000-07:00

Yup, it's true. On my birthday I noticed that not only were my eyebrows starting to come in , but my eyelashes have begun to return as well! Not exactly in keeping with my birthday wish lists of years past but certainly able to stir up some excitement this year. I have also noticed some very fine hair starting to cover my bald head. It is not that noticeable yet to the naked eye but if you look at it in a certain light it looks like a halo of sorts (You know, like in Touched by an Angel when the main character would finally tell people, "I am an angel of God." and they would backlight her until she seemed to glow...)

Anyway, it's been a long time since I've written - mostly because there has been so much going on and I've been pretty exhausted, but also because I want to write about everything and that takes time and energy so I have just put it off.

Let me just tell you one story and then I will go back to the beginning and finish my post about radiation...This story takes place in a bank...well two banks to be exact. I have been a rebel. You know those signs they have in banks these days that tell you to remove your hat and sunglasses so that they can film your face in case you plan on robbing the bank? Well, I don't always comply...Bank number one is a PNC bank in my neighborhood that I have been going to for over six years. When I go to make a deposit or cash a check, they are usually very polite and say, "Have a nice day sir." Now I get the whole bald headed thing, and I even realize that men may wear dangling earrings, but come on, I hand them my photo license and my check, etc. has my name on it. Strike one for them.

On the other hand, I have been going to watch Colleen's daughters Becca and Olivia play lacrosse all over the place. One recent evening I had to cash a check and we would not have made it back to my bank before it closed so we went to a local PNC bank (in Warminster, I think). It was a warm day so when I walked into the bank I didn't have my hat on. I witnessed an amazingly friendly staff. There was a tall woman dressed in bright colors - a yellow blouse with lots of beads - who was behind the counter and seemed to be the manager. She was attending to people in the drive up window and she seemed to know everyone. She called people by name and asked about their family, plans for the weekend, etc. The teller didn't seem to know everyone as well but she intentionally chatted and commented on the weather or asked about weekend plans.

I was waiting in line when the manager spotted me and said, "I just have to come around the counter and give you a hug." And so she did. She said, "You keep fighting and know that we're all pulling for you." Or something like that because I was too surprised and speechless to know if I am remembering the conversation verbatim. This genuine act of kindness felt comforting and not intrusive at all. Soon after, a man came in and commented on some renovations that were happening in the branch. The manager said that she had fought for the changes and that it was good for "the team" to see them taking place. She said that all the branches around them were beautiful. The man agreed and said that he could do his banking at any of them but he chose this branch because it was the friendliest. That's all it takes - a few words, a kind act, an expression of empathy - to make all the difference. It certainly made my day and has stayed with me long after. When I went to leave the bank that day, the manager called after me, "Now you stay strong, take care of yourself," and she waved to me. As I waved back I realized that the list of specific strangers that I find myself praying for is getting longer and longer.

Now I will try to update the radiation post so that you can get a sense of that delightful process. Just picture the movie Ground Hog Day (only with a million rads going through you...) but I don't want to spoil the surprise...it should be up in a few days. Enjoy the weather!

The 30 Days of Radiation.....

2009-04-05T04:58:00.000-07:00

Hi, just wanted to let you know that I am a couple weeks into radiation and it is sort of like that movie Ground Hog Day with Bill Murray, where he wakes up each morning and relives the same day, - only with a million rads going through me....but I digress...let me start at the beginning....or at least where we left off in the last blog. (Actually, 2 blogs ago...I started writing this in the beginning of April but now it is May 24th....anyway...)

On Tuesday, March 10th, I went to see Dr. Gressen (radiation oncologist), and he discussed the course of treatment. He said that radiation is used in my situation if the tumor is 5 cm or more...so 8.5 cm sort of locked us in. I was "tatooed" (more about that later....) and then had a CT scan. He told me that usually the radiation field includes a portion of the lung but since I had/have pneumonitis he will radiate the least amount of lung that he feels comfortable with without compromising the prognosis.

Now, about the tatooing, what happened to the indelible purple marks that my grandmother had when she had her cobalt treatments? I thought that tatooing was a figure of speech until the tech said, "Okay now, just a bee sting..." Ouch! Followed by several more...(a whole damn hive if you ask me..) I was set to return on Monday, the 16th for a re-check on the markings and my first (of 28) treatment. But wait, if that isn't enough fun, we had to revisit the pelvic ultrasound on Thursday, the 12th. The tech was very nice but it was a little scary when she asked me what an oncologist did "that was different from a surgeon"... I would recommend skipping the pelvic ultrasound whenever possible, and God willing, I will never have another one.

So, Monday the 16th comes and I have an appointment for 2:30 in the afternoon (how many of you thought 2:30 a.m.?) Now I am actually in the radiation treatment area...marked with skull and crossbones...2 foot steel doors and those signs that you may remember seeing if you were a child of the cold war, that marked "air raid shelters" which held canned goods from 1964, to which we would have to flee in case of a "CONALRAD" Alert...can you say "Bay of Pigs?"

Just a little side story, I remember being in first grade and having to go to the gym for an air raid drill. We crouched down with our coats over our heads for what seemed like hours compared to the less scary, relatively painless fire drills. I asked my teacher why we had to put our coats over our heads and she said so we didn't get cut by the flying glass. So I asked her, "Why would the glass be flying?" A reasonable question for a six year old, and she just laughed and told all the other teachers but didn't answer me. The part they had left out so as not to scare us was that if we were in this position it meant that the United States and particularly Union, New Jersey would be under attack and that the glass would be flying because of the bombs...Luckily the nuclear age took over and the Board of Ed realized that they couldn't keep us safe from mushroom clouds so they gave up the whole practice of air raid drills...my friends in California had earthquake drills which consisted of them leaving the school building and running as far away from it as they could. Well, now I've gotten so far away from my story that I don't know where I left off.

Oh yes, the first day of radiation. I had to be checked and scanned again and it was determined that the "first" tatoos were not exactly where the Dr. wanted them to be. This was announced to me over the background music of Karma Chameleon and Walkin on Sunshine...very surreal...and before I knew it another swarm of bees attacked and I had new blue tatoos... and because I had been on the table with my arms over my head in an unnatural position for 45 minutes, it was decided that my first treatment would be delayed another day until the 17th.

My first treatment was fine although there was some anxiety if I let myself think about what was actually happening. The whole thing took about ten minutes and then I saw Dr. Gressen. I will see him once a week. The rest of the treatments took about 5 minutes except when the machine broke...but that was only once...Because this became such a routine, it was interesting to observe such things as - Karma Chameleon and Walkin on Shunshine will always be playing if you arrive at 7:50a.m. (which I tended to do especially because of the parking issue - but don't get me started on that yet...) If you arrive a little later you'll hear Rod Stewart. Unless it's an "all oldies day".

On my first day I didn't know the techs and in my anxiety I said, "You know, in chemo, Thursday is soft pretzel day." To which they replied, "It is here too!" Ahhh continuity... To this day I still cannot force myself to eat a soft pretzel...

The techs were nice, the treatments themselves were quick and painless, and overhead, some of the ceiling tiles were replaced with a beautiful scene of a park in the spring. There were daffodils, and hyacynths, and tulips, and new budding trees and a lake. Off in the distance you could see a gazebo. Since it was early spring I liked seeing all this. I was informed that they didn't change the tiles with the seasons but I liked to imagine what the other season tiles would look like anyway.

It seemed right that I was beginning this phase of treatment in the Spring. Every day when we arrived, we noticed that the trees were flowering and the daffodils were opening just a little more. Soon, I knew that my hair would start growing again. When I worked for the American Cancer Society (right out of college) we all had to be responsible for a fund-raising project regardless of what our position was (I was Director of Service and Rehabilitation). I hate asking for money, even if it is for a good cause, so I thought I would pick a special event. Then I heard about Daffodil Day. Daffodil Day coincides with the first day of Spring and is supposed to be a sign of hope for those going through cancer. So I became the Daffodil Queen and that was my fundraising project each year. So this year when Daffodil Day rolled around I don't know why I was so surprised and touched when I received a bouquet of daffodils upon leaving my treatment that day. It is different being on this side of the hospital gown. My thoughts went back to planning meetings, "Patients will like getting the flowers," "Contact different departments in the hospitals and suggest...."
But now I was the one getting the flowers. Wow. I have cancer. Me. I have cancer. As I walked out of the treatment room to the last notes of Walkin on Sunshine, I realized that the daffodils really do make a difference. There is hope, and I am not alone.

I was not exactly prepared for the extent of the "side effects" of radiation, however. My doctor kept telling me,"You're doing great! You are going to be boring! Etc..." He said that I might feel like I had gotten a bad sunburn. He neglected to tell me that I would have gotten that sunburn without sunscreen, on the equator at noon. And because the effects are cumulative, that the effects would continue for a couple of weeks after treatment was over. I used a cream developed specifically for radiation dermatitis (burns) and it worked well but it took about a month after treatment for the burns to heal. If I had prepared myself for that it wouldn't have been a big deal.

I am set to see Dr. Gressen on May28th, and Dr. Kennedy on June 3rd. I will let you know what is next as soon as I know. I just have one more observation (for now) that I would like to share about the experience of having radiation treatment. If there is anyone out there who is looking to do some research - a master's thesis maybe - I would suggest studying the relationships and patterns of communication that develop among patients traveling this path together.

There are differences in the number of treatments that each person gets depending on the site being radiated and their own particular circumstances, but generally, we travel with the same group of people every day for at least a couple of weeks. At first I just smiled and others would do so too. If I found myself with only one other person in the treatment area we would talk, usually but not always, about our circumstances. If someone was new (and anxious) someone would take them under their wing. By the end of someone's treatment we all knew it. They'd pronounce, "Last week," or "Last day for me!" and we'd all congratulate them or wish them luck. After all we had spent every day for weeks with this person...even if just for a few minutes...even though we did not know, or ask for, each other's first names...And occasionally we would spend a little more time together sharing our stories and we would remember names like Debbie and Larry. But one thing is sure, that on the last day walking out of the treatment room they, and all the others before me as well as those who will come after me, will be in my prayers always. I am blessed beyond measure to have felt and shared the hope and peace that comes with this struggle.

Tune in next week to see a picture of me with peach-fuzz hair. It is white and I feel like I should be joining Sweet Honey in the Rock...(for those of you who don't know the reference, they are an AMAZING Acapella group of African American Women who, as they have aged, have hair that looks like mine (on purpose). If you have never heard them please check them out.)

Bye for now....

So, How have you been?

2009-03-08T18:37:00.000-07:00

Hello, it's been awhile...so get some snacks, I may ramble on with this one...I had my (third) mugascan on Tuesday February 17th and it was reasonably uneventful except for one funny story. I've learned that people can be very solemn when working around cancer patients, but if you give them permission to laugh, things can lighten up a lot. My head right now is completely bald except for One hair that is about 1/2 inch long and can be seen only in certain lighting. The one tech that I have seen for all 3 scans has always been very polite but sooo serious. So I showed her my one hair and said, "When I say I have to get a hair cut, I mean it." This time she laughed and said in her accented voice, "You're funny, you're a funny lady. We don't get too many funny people here..." And with that the tension eased and she was able to "chat" with me. And oh, PS, my mugascan was fine.

So I went for my last scheduled chemo on Thursday, February 19th. Same routine as the others. This chemo went smoothly and we were out in the shortest amount of time. I am going to bring a little something to my 2 nurses to say thank you and let them know what a difference they made in putting my mind at ease. It's a funny feeling. First, there may be more chemo depending on the final studies or a recurrence. But assuming the best, it is still a difficult place to be in. On the one hand, I am soooo glad that the chemo is over! But while I was getting chemo, I felt as if I was actively doing something to fight the cancer. Now that it is over it feels like "the die is cast" and hopefully it did what it was supposed to do. It's at these times that I remember what Dr. Simmons said, "Your cancer is in the pathology lab, the rest of the treatment is for insurance."

The side effects following this last chemo were the worst. They lasted a good two weeks. For those of you who remember what "Day Five" meant for the first 2 chemos, well, it happened on Day Three this time. I think I had a break for the last few due to the fact that I was on so much Prednisone, but who knows? This episode was very scary and I felt the closest to dying that I ever want to feel until it is my time...

Some amazing things happened too. One day I was sitting in Borders having a hot chocolate and people watching. I watched as a woman ordered a latte and was soo delighted that it came in a ceramic mug. I thought to myself, that woman really finds joy in the simple things. Later I stopped in the rest room and she was there. From behind closed doors she asked me, "Are you in the middle of treatment?" I answered that I was. She said, "I finished a few months ago...uterine cancer stage 4." I said, "Breast cancer stage 3." She laughed and said, "Nice to meet you." She told me that she saw me sitting with my hot chocolate in direct line with the only ray of sunshine and it reminded her of how healing it was for her to be in nature. She said that it looked as if I had good support. Then she told me that she would pray for me. Totally unsolicited and unexpected from a stranger behind a closed door in the bathroom. I was touched and told her that I would pray for her as well. This was a God moment.

There was another similar moment in a Starbucks. (Apparently I stop for a lot of coffee/hot chocolate these days...). Actually Colleen and I were there with Olivia on her birthday. We were laughing and telling stories when a man who had been sitting in the corner reading got up and walked over to our table. He introduced himself and told us that he was a minister in northeast Philly. He told me that he would be praying for me. So simple and yet so amazing for me. Acts of kindness. Offers of prayers from strangers. So powerful. Shared mostly, because my head is bald. And I don't always wear a hat because I get too hot. In a few months my hair will be growing back and again there are mixed feelings. For the most part this will be a blessing because it will signal that I am moving through treatment and healing - that I am on my way to the rest of my life. But there is a small part of me that realizes that once I have hair again and look (reasonably) like everyone else, strangers will stop initiating conversations with me about what is important, they will not come over uninvited and talk to me because it will feel intrusive to them, and perhaps what I will miss most, is that they will stop praying for me.

I have no doubt that those two strangers have been praying for me as I have been praying for them. Something caught their eye and indicated to them that I was going through treatment for something bigger than I could handle on my own, and through their gracious spirits they offered assistance. I have often wondered, especially lately, how many people are going through things "bigger than they can handle on their own" but it just doesn't show as clearly as a bald head. We may pray for people in general who are suffering, but for these past few months I've gotten a wonderful gift. I've gotten the gift of prayer from strangers who specifically prayed for me and reminded me that we are not strangers at all. I will miss that, but I will remember it.

So, on March 3rd (I told you you were going to need snacks...), I went to see Dr. Kennedy for my follow up visit. My heart rate is still high (it was in the 130s) but I hope as I can lose weight (including that prednisone weight...) and become more active that it will regulate itself. Dr. Kennedy is an extraordinary woman and doctor. I know without question that I am in the right hands. I thanked her for getting me through this part of the chemo and went to shake her hand. She bypassed the hand and hugged me instead. (Another God moment) She will be sending me for more tests over the next few months to check on the pneumonitis and see how the chemo did its job. I'll be on the bactrim for another couple months but off the prednisone after 5 more doses over two and a half weeks. She ordered another pelvic ultrasound to check on that "bright spot in my uterus" (doesn't that PET Scan seem like such a long time ago?). She needs to know just where I am concerning menopause in order to plan out the next stage of treatment. I will be getting tamoxifin for a period of time followed by femara.

On Tuesday, March 10th at 10am I have an appointment with Dr. Gressen, a radiation oncologist at Frankford Torresdale. He is going to mark me for the radiation treatments which will be Monday through Friday for 5 weeks. I believe they will start on the 16th because they still want the chemo to be working when the treatment transitions to radiation. Dr. Kennedy said that the fatigue from the chemo will last another few months (!) and the radiation adds its own brand of fatigue. Glad I have such wonderful support that I don't have to worry about doing anything. I want to thank all of you who have prepared a meal, sent a card, e-mail, or Facebook, made rice pudding, suggested funny movies, offered your humor or said a prayer for me. Your presence in my life at this particular time is worth more than all the medical treatments combined.

On to the next...talk to you later...

P.S. I will be uploading more photos soon...stay tuned...

Sue and the Blustery Day

2009-02-12T13:33:00.000-08:00

Today is a "blustery" day. Large branches are down in the yard along with the patio furniture and our white Christmas tree with the multicolored lights that our neighbor has petitioned for us to leave up until St. Patrick's Day each year. (She says that she loves to look out her window and see it). The cover for our grill has blown away and I doubt we will ever see it again. All this being said, I am looking forward to Spring. The warmer weather this week has encouraged me. There will be an end to winter.

But not just yet. I saw Dr. Kennedy on Tuesday, February 10th. Dan was there and accessed my port easily...now if only it would be that easy when I go for chemo next week...We went over my old and new side effects and then she was concerned about my heart rate - which was a little fast. (120) After I walked around the office for awhile it was 118. Even so, Dr. Kennedy was not happy and decided that I need to have another mugascan (my third) before she can decide what she will do in terms of my next chemo. The adriamyacin is cardiac toxic and she wants to be cautious. If the scan is fine we will go ahead with chemo as scheduled for Thursday February 19th at 8am. If not she will consider something else.

Soon I will be moving to radiation. But I am not going there just yet. If I have learned anything it is to stay in the moment. Easier said than done. I am more tired than anything else. We stopped at the mall the other night and I would lock my sights on the next bench and just try to make it there. I didn't have trouble breathing, it was mostly the fatigue. It was draining to keep putting one foot in front of the other and after awhile my legs felt like "rubber band legs". But I did it. The other "new" thing this cycle was that the heels of my feet turned bright red and were sore. Dr. Kennedy looked at them and thinks that it's from the taxatere. GI symptoms, neuropathy of hands and feet, status quo. As my mother would say, "Do you have any other happy news to tell us?"

Keep sending your suggestions for funny movies - they've been great! I have a long way to go and right now, unfortunately, it seems that I am struggling with many issues, so please keep me in your prayers... Later...

It's Still Winter...

2009-02-03T16:40:00.000-08:00

I can't believe that it is February already! I can't believe that the ground hog saw his shadow indicating 6 more weeks of winter (although when you take him out of his hole and put him in a cage in the sun I'm thinking he's going to see a shadow...). So, I'm having a little difficulty thinking clearly - it seems to take a lot of energy to think about what I want to say or even to follow a conversation sometimes. I will try to be as coherent as possible.

On Tuesday, January 20th, I went to see Dr. Kennedy and was surprised and happy to see Dan, my chemo nurse. He and a few others from Torresdale rotate to this office on Tuesdays. He drew blood from my port for more tests including a second liver panel. When I saw Dr. Kennedy she said that my liver function numbers were good. I am moving through this pretty well as far as I'm concerned. The prednisone was decreased to 10mg for a few days to be further decreased to 5mg by the time I am ready to have the next chemo. She cleared me for Thursday, January 29th at 8am. (Kenny's birthday...).

On chemo days we've fallen into a routine...Col and I eat, I take meds and we leave for the hospital. I sign in, we wait to be called into the lab where I am weighed (yuk - especially with all that prednisone - yuk) and then go into the chemo room, sign in, leave the blood tubes and take MY seat around back in Dan's section. When Susan gets to the hospital she checks in with her department and then stops by. Later at her next break she'll come by again and sometimes bring me a hot chocolate. Col stays with me as we pray that the port can be accessed easily, that the bloodwork results give a green light for the treatment, and for the next 5 hours we banter with the nurses, eat pretzels ( Thursday - Pretzel Day), talk, use guided imagery, etc. At some point, after the benedryl is infused, I get sleepy and Col gives me a blanket and her zune (MP3) and I go off to sleep for awhile and she gets to read or do some work. I am usually awake enough to participate in any conversations that are going on around me and I rarely miss an opportunity to throw in a witty remark. I like to be awake and watch Dan push the Adriamyacin and then I am usually set to go. I have my next appointment card in hand and we stop at the desk on the way out with our co-pay check all written out. Occasionally we will stop for something to eat but most times we'll head home and I will sleep on and off for the afternoon.

I've been thinking about what I've been doing to help myself heal and I realize that I've been pretty creative. One of the things that stands out that I'd like a little help with is laughter. I don't watch a lot of TV, but I do watch Raymond and Friends after 11. Sometimes Frazier. So my request is that you send me (blog, e-mail if you can't blog for some reason) the names of your favorite movies that will make me laugh. I realize that narrowing it down will be difficult since I laugh at just about anything, but try. And I know, for some of you that it will be tempting to suggest The English Patient, but please don't since I will never watch that movie again...

Talk to you soon...I'm able to think again...

Is It Hot in Here or What???

2009-01-14T18:01:00.000-08:00

Well, here we are in mid-January, it's freezing outside and I am so hot I could scream. But I am getting ahead of myself, I want to start with a word about Dusty.

Dusty has been our faithful cat ever since we rescued her from the Women's Humane Society 8 or so years ago. She didn't jump or bite or claw. She was very affectionate and intuitive - she would lay right next to me on chemo day and be close by during difficult times. As far as cats go, I would have to say she was the sweetest I've known. She was a chow hound though and liked her food. A lot. So one day right after the New Year when Col noticed that she had left some food in her bowl, we were concerned. Then she had some trouble breathing so Sue talked to MaryLou and took her to the Emergency Vet.

In a sad and crazy twist of fate, Dusty was diagnosed with cancer (?!?) and died two days later. We were able to take her home for a night before Sue and Col had to bring her back to the vet. So begins the new year.

On Thursday, January 8th, when I came home from my 4th chemo, I missed her the most. The chemo itself was relatively uneventful except that I needed some heparin to clear my port and that delayed things a little. Dan and Lynn (the RNs) were as entertaining as ever and gave me a few good ideas for exploiting my bald head...more on that at a later time...

Neulasta the next day took 10 minutes and we were on our way home. The effects of the chemo are cumulative and both my body and my brain are feeling tired and sluggish. I was on the computer this morning and Susan asked me to see what the temperature was outside. I was trying to think where we had a thermometer outside that I could go look at when she said, "Uh, maybe weather.com?" For the life of me it would never have occurred to me to use the computer...that does become frustrating...

Physically, just more of the same stuff but now my taste is changing and food, especially sweet things, taste like unknown substances - not always horrible - but unrecognizable. And my sensitivity to the heat is legendery in this house...perhaps this has something to do with the process of throwing me into full blown menopause (as if keeping a sunny disposition during cancer treatment isn't challenging enough...) My hands and feet burn and swell at will, along with my face that has filled out like a round prednisone balloon...All in all I am not at my most attractive...but I have completed chemo #4...

And now I am falling asleep as I write this so I'll stop for now and write more later. I am enjoying some books I got for Christmas especially one called the Cancer Poetry Project. I can frequently be found on Facebook, I am a force to be reckoned with at Canasta (thank you Aunt Roz), and in my spare time (those moments in between napping) I am trying to crochet a little.

Thank you for all of your continued support - it gives me strength every day. And a special thank you to my friends in the ER at JFK. Your unexpected card and gift is very much appreciated as are your thoughts and good wishes.

Happy 2009!

2008-12-31T02:13:00.000-08:00

I usually wake up these days around 4am. It just happens. I may go right back to sleep, I may listen to a guided imagery CD, or I may get on the computer for awhile before easing back into sleep. Today is New Year's Eve. The year 2009 is less than 24 hours away. There is much on my mind.

First, the gratitude...always the gratitude. I am humbled by the love I am surrounded with - it strengthens, comforts, and sustains me in ways that I am continually learning about. It challenges me to be better, to make choices, to share more fully...I constantly fall down on the job - but this love I feel reminds me that love itself is the only reason we are here anyway. I thank all of you for being a part of my life this year.

Christmas did not look the same this year but it was wonderful. The house was full of family and love and laughter. (especially when someone bought and wrapped the same gift twice for the same person and didn't realize it...) We had amazing food that I was able to eat and enjoy. I was tired but not sick and watching everyone open gifts and enjoying each others company was pure joy.

Even though my numbers were down on Christmas Eve and Christmas Day I was well enough to go to the Christmas Eve Service with a mask. It was hot in the sanctuary so I made the decision to go "hatless". I didn't realize what an impact it would have on me - it was more of a comfort thing in the moment. The hair loss doesn't bother me except as it influences perceptions and the way others may treat me (see earlier blog posts for more on this...) I'm not interested in a wig, and I wear hats occasionally for one of two reasons - 1) It is winter and my head gets cold and, 2) Other people are sometimes uncomfortable seeing my bald head. Well, so long number 2. (Stephani, it's only taken me the better part of 20 years...) In church on Christmas Eve, with no hat, no hair, I was able to be comfortable being just me exactly as I am without any pretense of hiding. Very freeing. It is not every day that you can feel comfortable looking like Uncle Fester...

But it hasn't been all joy and light on Rita Road. 2008 has probably been the most difficult year on record for too many reasons to list here. If I look at items on a stress scale there are very few that one of us has not experienced personally this year. So there has been some sadness and grieving mixed in with the holidays. There has been some real disappointment in the abandonment by people we had once thought of as friends. We continue to pray for them and hope they can find peace. The trials of this year have made us all stronger and it's the strength I want to take into next year...I'd like to leave the pain behind...

On Tuesday, December 30th I saw Dr. Kennedy. I tolerated the changes in chemo well and she was happy! (We really like it when she is happy). She is reducing the prednisone again so now I will be taking 20mg a day with pepcid, and the bactrim 3 times a week. Lungs still good. I am scheduled for my next chemo (#4!) on Thursday, January 8th at 8am...

Okay, so while I've been all over the place with this post it seems that I want to tie up loose ends. In re-reading what I just wrote I am tempted to delete it all and just say "Happy New Year!" but I won't. The theme that comes through to me is one of healing. Physical, emotional, and spiritual healing...for all of us. This is my wish as we move into 2009, along with hope, and moments of great joy. May we continue to face whatever comes our way with humor, laughter, tears, and love. Thank you all for your love and support. It means more than I will ever be able to say...

Back on Track

2008-12-20T07:30:00.000-08:00

Hi again,

It feels like it's been awhile - and I guess it has. Most of December has been a blur. An interesting Advent...waiting, contemplating...praying... but now is the time for joy and celebration and peace.

I've been taking prednisone, bactrim, pepcid, etc. to deal with the pneumonitis and I had to take a little break from chemo. The break reminded me that when I am through, my energy will return. I was able to enjoy a part of the season that I wouldn't have been able to. Instead of my counts being down, I was able to do some shopping and go to a holiday concert. I even went to a midweek advent service. I stayed close to home and the outings were brief, but the turn of events was great. I did, however have some concern as to how my treatment would proceed and what that would mean for me.

I saw Dr. Kennedy on Monday December 15th and got the go ahead to resume chemo on Thursday December 18th at 8am (exactly two weeks later than scheduled). She had been away at a conference and presented my case to her colleagues so I got the benefit of expert collaboration and that is comforting. I won't take the cytoxin this round and there was an initial thought of changing the neulasta to neupogen, but now I'll still take the neulasta only in a slightly smaller dose. The cytoxin is the most likely of the drugs to have caused the problem but it could have been the taxotere. We won't know until I have chemo again but I should be on enough support meds to be safe. Then we would just shift again...add cytoxin, subtract taxotere and then add a new combination of chemo at the end of my scheduled cycles...but I get ahead of myself...I like a plan but all plans come with wrenches...

So Thursday morning went as smoothly as it could. We arrived on time, Dan picked us right up, numbers good, port accessed, pulse ox compatible with life....all set. Relaxing, uneventful, over. Thank God. Friday, back for neulasta shot and home just as the rain turned to sleet and snow.

So now it's just managing the fatigue and side effects. I just have to get some wrapping done. If all goes well I will be able to attend Christmas Eve Service with a mask on...and a completely bald head that I have to admit I am starting to like in its simplicity... (thank you Donna!).

I do have one funny story to share with you before I end this post. After we left chemo we made a quick side trip to Sam's Club. I look like I'm in my pajamas with sweat pants, flannel shirt and my "Fight Like a Girl" Breast Cancer Survivor baseball hat on. The "super-alert" salesperson assigned to sell professional portrait packages approaches me and asks me when the last time was that I had a professional portrait of myself. (I'm thinking my college yearbook picture but that has no bearing on the story) So without missing a beat, I said to the salesman, "I'm not really looking my best these days." To which he replied, "Oh, it wouldn't be today.....it would be this weekend." I'm sure I could spruce up by then but I think I'll pass anyway until I grow some hair...

Until next time....maybe one more before Christmas....

...A Funny Thing Happened on the Way to Chemo...

2008-12-05T18:02:00.000-08:00

Hi again. You may remember from the last post that I was waiting to hear from Dr. Kennedy about the results of my tests and having chemo #3. There was something significant for me in getting #3 out of the way since it is the halfway mark. When I spoke to Dr. Kennedy she said that my chest x-ray was negative, my bloodwork, including blood and urine cultures were fine and that I should plan on having chemo on Thursday the 4th as scheduled. Since we spoke on the afternoon of the 3rd, she said to take both doses of decadron together. The temperatures have continued but I have been able to take tylenol at longer intervals. I could go about 16-18 hours before the temperature would break 100, but it would hover in the 99s. I took tylenol at 3:30pm and Dr. Kennedy asked that I not take another dose before she saw me in the morning before chemo (which was scheduled for 8am). The fever seemed to break after the decadron and by morning I was back in the 97.9 range..go figure.

We went to chemo feeling a little hopeful. It started out well - I didn't have to be weighed in or have bloodwork because I had just done all that 3 days earlier. (and I had lost a few pounds!). Dan (a favorite nurse) checked me in and paged Dr. Kennedy. She wanted some routine bloodwork, vitals, pulse ox, etc. and then would see me to write orders for the chemo....uh huh...temp was down, blood pressure and heart rate were up and resting pulse ox was 94. These were not particularly good indicators. My pulse ox should have been 100. So....when Dr. Kennedy came in she made me walk around the loop of the chemo room and the office with a pulse ox monitor on my finger. My response was to promptly de-sat to 87 while my heart rate went up to 149. I was still asymptomatic (no coughing or shortness of breath)

So chemo was cancelled and I had to go to the ER for a CT scan since they were so backed up. Dr. Kennedy was looking for a blood clot (pulmonary embolism) or inflammation of the lungs possibly caused by one of the chemotherapy drugs. Once in the ER I felt as if I had died and gone to ER heaven (probably not the best metaphor under the circumstances) As one who has worked in an ER for 27 years I can honestly say that my experience at Torresdale was remarkable. The doctor and nurse were both personable and competent and kept me and my family informed every step of the way. My nurse came to check on me in CT and reported back. When Dr. Kennedy decided to admit me to the hospital, the ER staff called for a room and my nurse took me upstairs herself within minutes of getting a room assignment on the telemetry unit.

The good news was that I didn't have an embolism, but the scan did show pneumonitis which is irritation or inflammation caused by one of the drugs. Dr. Kennedy said that she is glad that we caught it because it could be life-threatening especially if I had gotten more chemo. The damage can be reversed with meds but she wanted to talk to some colleagues about how to proceed with my treatment regimen and also wanted to get another mugascan to make sure that my heart was still ok. My lab work was off (white count of 20,000) but it was hard to say how much was affected by the decadron.

So I was admitted to telemetry so that I could continue to be monitored. My labs on Friday were all back to normal. My temp stayed low, blood pressure was good, and slowly my heart rate came back to normal (unless I walked around the hall without oxygen). With oxygen my pulse ox stayed at about 97. Because I can speak "ER talk" the staff gave me all the details I asked for about my condition. I won't bore you here but it was helpful to me. The muga scan was fine (thank God) and I had a pulmonary consult.

Here is what we came up with for the moment. Dr. Kennedy will take away the cytoxin from my chemo. She says that this is the most likely drug to be giving me problems, although it could be any of the others including the neulasta shot. She also is changing the neulasta shot to neuprogen and I will have to go for several shots every other day following chemo. I'll be taking prednisone, bactrim, and pepcid to try to clear up my lungs. I have an appointment to see Dr. Kennedy on December 15th and I will have a repeat CT. Hopefully, I will be able to have the new, improved, chemo #3 that week so we don't get too far off schedule, and hopefully it will be the right combo. I want to have the best possible regimen to avoid any recurrence, but I don't want the treatment to kill me or worse...so I am trusting her to know what she is doing. I know she will be vigilant.

While all of this sounds scary and crazy (and it is), it is a better outcome and treatment plan than most of the others so I am grateful. I have been listening to a series of wellness CDs for Fighting Cancer, Optimizing Chemotherapy, Managing Fatigue, Dealing with the Side Effects of Cancer and its Treatment, etc., and they have been very helpful. But that's a story for another time...

For tonight, as the temperatures drop my thoughts turn to the 60-70 people, about 50 of them youth, who are sleeping out in cardboard boxes on the front lawn of the church to raise awareness and money for the homeless. May God be with them and keep them warm. Thanks for listening....

Thanksgiving Before and After

2008-11-26T12:10:00.000-08:00

"Have no fear for what tomorrow may bring. The same loving God who cares for you today will take care of you tomorrow and every day. God will either shield you from suffering or give you unfailing strength to bear it. Be at peace, then, and put aside all anxious thoughts and imaginations." - Francis de Sales.

Today I am filled with gratitude. Most days I am filled with gratitude, but as we approach Thanksgiving this year I am acutely aware of all of my blessings. The words of encouragement above were on a little pocket card that my mother sent to me a few weeks ago. This simple gesture was one of the most supportive things my mother could have done. I'm sure that she doesn't even know it because she always feels that she "should be doing more." I am grateful that my folks are already settled back in Florida until the summer because they really enjoy themselves down there. I thank God for the familiarity of our ongoing conversations via e-mail, the knowledge that I can't stop them from worrying but I don't have to live it with them, and for the hope that when they return I will be much further along the path of healing.

As I rejoin this post, Thanksgiving is already past - time goes by so quickly. We spent a lovely few days with family in the country. It was very relaxing and the food was great. Like a much needed oasis. And then we came back.

I've seen Dr. Kennedy twice - once for my regular follow-up visit, and once for an unscheduled visit to try to figure out why my temperature keeps going up and up and up unless we have a tylenol moment. I've also developed an annoying little cough this cycle...had to have CBC, blood and urine cultures, and a chest x-ray...Trying to stay centered is difficult at times considering all the possibilities. But my "team" is always there to remind me that my body is strong and is helping to heal itself, and that no matter how many wrenches are thrown into the system, that we can deal with them. I thank God every day for the people who are walking with me.

I am waiting to hear from the doctor to see what our game plan will be and if I will be able to get chemo as scheduled on Thursday, December 4th. I want to continue with the regimen of drugs that will give me the very best prognosis, but depending on what she finds, she may want to change or alter the meds...we'll see....

Keep a good thought...I felt like writing a little something but now I really have to take a little nap......the last time I did that I came back and it was after Thanksgiving.....and this post was all a mishmash so I will end here and start a new one when I am more rested.....

Chemo II...The Saga Continues...

2008-11-14T06:05:00.001-08:00

On Thursday, November 13th we arrived at Frankford Torresdale at 8am for my second chemo. I wasn't quite as anxious as I was the first time because I knew the ropes. It was amazing how some of the nurses and even the volunteer remembered our names. One of the volunteers commented that I still had hair. When I said, "Not for long," she said "You might not lose it." I told her that I was pretty sure I would, so she remarked that I had nice eyebrows and maybe I wouldn't lose them. As I laughed and thanked her, I realized that she didn't have any eyebrows, they were drawn in with a pencil...

We got our private corner again and didn't have to listen to the TV. One of my favorite nurses (already) came over and told a story of the LOUD family that had been in my corner on a different day and watched nothing but Jerry Springer and Court TV. A little glimpse of hell...

Since I was so wordy in my last blog I'm going to keep this short. I am 2 down and 4 to go...that is one third done with this treatment cycle...
When I mentioned that to my nurse she said, "then this is your third treatment?" And I said, "No, that would mean that I was halfway done..."
I silently hoped that the pharmacy had mixed my meds. (Just kidding, this particular nurse was a bit distracted - listening to a tiny hippopotomus that sang the Christmas song with the same name....and talking with a vendor about her experience visiting a psychic...in between that she gave good care and while she was doing other things or at lunch, the other nurses were all very attentive)

Dr. Kennedy came through the chemo room several times and stopped by. She is clearly the doctor to have. She is smart, compassionate, and a good advocate for her patients. And all the nurses know that they had better be on top of her patients...that's not a bad thing...

On Friday I went for my Neulasta shot, and now I'm left to manage side effects and ride the wave until a week from Tuesday when I have my follow-up appointment with Dr. Kennedy. If last time is any indication, I should finish my support meds on Sunday and hit a wall on Monday. The rest of the week is dealing with a rapidly dropping scary low white count so I have learned that I will not be attempting any outings during that time or having any company. Hopefully, by the end of next weekend my numbers should start to come up again and I will feel stronger...Thanks for reading, I'll write more as the mood strikes...

Hair Today, Gone Tomorrow...

2008-11-14T04:11:00.000-08:00

So it's been an interesting week. I've had more energy because my numbers have been coming up - just in time for my second chemo, and the more bothersome of the side effects have leveled off. I took a breath and appreciated the beauty of this season and noticed that the leaves were all letting go and falling - still pretty in the air and on the ground, but clearly marking the transition to a winter that is just around the corner. And I realized that as this was happening in nature, there was a striking parallel in my life. My hair, too, has been "letting go and falling" - almost overnight. Those of you who know me well know that losing my hair was not a major concern of mine -it is not a process that hurts, it eventually comes back, and it is a visible reminder that the drugs are working, and healing, and cleansing my body of any stray cancer cells. But there is something to be said for the visual and its impact.

I have a lot of hair even when it's cut short and within a few short days I've lost enough hair in the shower and in my brush to create two wigs. That leaves me with some but not much hair for my head. The hats are ready, no wigs for me, and hopefully when I can be around people again this cycle we can have a small ritual healing celebration to mark this event. As much as I am ok with the prospect of baldness, the reality of it brings up a concern about the change in perceptions - others' and my own.

Right now, I have no illusions that I am fighting and healing from cancer. I feel it every day in my body and soul. But I am still me - I laugh a lot, I recognize myself in the mirror, and I have interests and (can occasionally have), conversations about things that have nothing to do with bodily functions or medically related topics. But as I look in the mirror and begin to see my scalp I know that in a couple weeks I will look very different. I will see a cancer patient. Because I've had a chance to get used to living with this disease I am hoping that whatever feelings might come up for me will just be part of the rich experience of this journey. My concern (if I even have one - you are just reading early morning musings of someone the day after chemo) is that while I have been very much aware of the cancer and the treatment, etc., unless I'm having a bad day or moving slower, most people would have no clue that anything was going on with me. As a matter of fact, last Sunday in church folks were commenting that they "couldn't believe how good I looked." Then my hair started falling out. My experience with others has been that friends, family, acquaintences, feel better when "the patient" looks well and is upbeat. I'm pretty comfortable feeling how I'm feeling and letting people know what is going on with me. I don't feel I need to keep up any pretenses. But when people look at me and can't help but see a cancer patient, I get a little concerned that that is how I will be treated, that some won't be able to get beyond that and it may be too uncomfortable for them.

I suppose we'll cross that bridge when we come to it. Right now, with the image of falling leaves/hair and the reminder that winter is just around the corner I am nesting. I am looking forward to the holidays this year. While they will look very different from holidays past they will be full of love and gratitude and such joy. Having children around is such a blessing. As it stands now both Thanksgiving and Christmas fall at a time when my numbers should be fine...

I remember the day my mother had her second mastectomy. It was the beginning of December (1979) and I was sitting in the surgical waiting room with my father and Christmas music was playing. I love Christmas music, but I kept thinking that if something went wrong, or if this didn't go well then I would always associate it with Christmas music. Luckily things went well and my mother and I still enjoy listening to Christmas music together. So yesterday when I went to my second chemo and heard the Christmas music playing I felt some strength from those in my family and others I've known who have gone through this before me. It was very comforting. I am also comforted by the season of gratitude marked by Thanksgiving and the anticipation of Advent and the love and joy and promise of Christmas. And instead of the bleakness of "post holiday winter" I am looking forward to a time of hibernation and healing. I will have the opportunity (unencumbered by the obligations of work, etc.) to spend cozy time indoors - maybe with a fire, maybe watching old movies or something that will make me laugh, reading when I can, napping, staying in touch through facebook, e-mail, the blog, and occasionally phone calls or a visit here and there. And in the spring when the chemo is over (God willing) and we begin to move on to radiation, and the trees are budding and the earth is in renewal with the promise of rebirth and resurrection...my hair will slowly but steadily return...

Miss Me?

2008-11-07T19:44:00.000-08:00

Hello....just thought I'd give you a little update before my next chemo....right now I'm feeling pretty well - just a little tired and one or two GI annoyances. I'm gearing up for round two which will take place on Thursday, November 13th at 8am assuming my numbers are good. I have debated how much I will write on this blog because I want people to keep reading, but it is also for me to process this experience and to have those of you who wish to, walk with me on this journey. So I've decided that I will share what I can but hopefully I won't be too graphic. I am also doing other writing and I will entitle the upcoming book ...What I Didn't Say in My Blog...

All that being said, the first chemo wasn't too bad. The support meds did a great job for the first few days following the treatment. The Neulasta shot has its own set of side effects but they sort of blended in for the moment. Monday (the fourth day) I hit a brick wall. My thinking was foggy and I had to lay down in the middle of the day (!) Tuesday was a bit scary and I felt pretty weak. I went to see Dr. Kennedy for my follow-up on Wednesday and she told me that my white count was 700. No visitors or crowds for me...just the thought of me working in the ER brought images of the girl in the plastic bubble to mind. Dr. Kennedy said that younger, healthy patients seem to drop their white counts lower and faster than the older patients. I think she was lying...like "it's good luck when it rains on your wedding day"...Anyway, she said that it would continue to drop until Saturday or Sunday and that that was the crucial time for infection. She said that after that the white count would start going up again. I had to keep taking my temperature. I wasn't quite as annoying as newly diagnosed diabetics who check their blood sugars every half hour but I was probably close. My temp started out in the 97.5 range and the highest it got was 99.2 one morning at 4am. I took two tylenol and that was that. If it went to 100 - 100.5, I would have had to call the Dr. I have a whole list of delightful possibilities that would prompt a call no matter what time of day or night that they occured. I only had to call once on Saturday night. (I did have to call again on Wednesday but I'm not counting that because it was for the same issue....) My worst time of the day has been between 11am or so and 3pm.

Sunday and Monday (Nov. 2nd and 3rd) I started to feel better. Susan got me a shower chair which has been a Godsend and I am noticing that my hair is beginning to come out - not dramatically - but enough. I have a lot of hair to begin with but I suspect this next round will encourage it to "let go and be free!" The chemo attacks all the fast growing cells in the body and it is interesting to see and feel this happening. It reminds me that these drugs are doing their job... sort of like the pumpkins in the picture...before and after chemotherapy and radiation....

I was able to get out and vote - I hope you all made it to the polls. I was listening to the story of a 92 year old woman who had had a stroke and all sorts of medical problems who felt that she absolutely had to vote in this election, so she got an ambulance to bring her by stretcher to her polling place and she was able to vote. While I am in awe and applaud her determination, I wish someone had told her about proxy ballots....

Thank you to everyone on the Women's Retreat who prayed for me and signed my card. And thank you to those of you who told me that you missed the blog...I'm never gone for too long...

...And Chemo....

2008-10-24T19:49:00.000-07:00

Hi, I bet you are all wondering how I am going to find the humor in chemo...well...On Wednesday I started taking Decadron (one in the am with breakfast and one with dinner). There are alot of support meds to help the side effects - cardiac, GI, white counts,etc. I have to say that I didn't get much sleep Wednesday night. But by Thursday morning I just wanted to get the show on the road and the first treatment behind me. I've sat and talked with many, many people while they were going through chemo but that didn't help me in knowing what my personal experience would be like (and there are too many variables...no two treatments are the same)

We arrived at Frankford-Torresdale on time (9:15am) and I was taken back right away. I was weighed-in - ugh, worst part of the whole day - and then the lab tech asked me which arm she could draw blood from. I told her, "Neither, I have a POWER PORT." Duly impressed she sent me into the chemo room to have one of the nurses draw the blood and start the treatment. The chemo room consists of about 25 lounge chairs that were filled constantly with a variety of patients - some treatments take longer than others - but once someone left their chair wasn't empty for long. Since Col and I must have had that "deer in the headlights look in our eyes" I was immediately pegged as a new-bee. This meant that a funny, irreverant, caring nurse named Dan came over and told me that his name was 'Dave'. He quickly moved on to more helpful hints like which lounge chairs didn't go all the way back, how to minimize side effects, and that Thursdays are soft pretzel days. All of the staff and volunteers were kind and compassionate, but I had the most contact with Dan and Lynn who were also funny and had a way of putting me at ease. I was most concerned with what it would be like to access the port and if I would feel any pain throughout the process. I got honest answers and the whole day went much more smoothly than I had expected.

Dan drew some blood from my port and I was so relieved. Then Susan was able to slip away from her patients so that we all could meet with Dr. Kennedy first. After that I was hooked up to the chemo and given a cozy blanket. I was given decadron, emend, benedryl, taxotere, adriamyacin, and cytoxin. The adriamyacin was red and had to be "pushed" but the others just infused uneventfully I am thankful to say. They have to tell you what "might" happen and I have to say that that is always a bit unnerving.

The rest of the time was an adventure in people watching. We were there for 6 hours from start to finish (it will be slightly less in the future because I won't always have an appointment first and the initial teaching is out of the way). We were sitting in a little alcove area that I liked for many reasons - a little more privacy, and the TV was not on. We were visited periodically by volunteers bringing around trays of goodies (not what I expected for this group...) and occasionally the volunteers would take a break and sit in our alcove to talk about themselves and/or their pets. We also had the pleasure of chatting with another patient who "came to visit me" (He was done with his treatment but not with his snacking...). For the sake of confidentiality, "Ralph" (not his real name), is an 83 year old Frenchman who likes to write his age out in Roman Numerals - LXXXIII - because it seems more "majestic" and "olympian". He calls himself a "lifer" and has so many stories that you wish you had a recorder. Even my benedryl induced stupor didn't slow him down. He has recently given up driving because he can "only see out of one eye - and not well at that". He had been driving by following the tail lights of other cars and realized that it could present a problem if someone's tail light was out...I am sure I will see him again.

I am trying to be compliant, flooding myself with fluids, and "grazing" instead of eating regular meals. My first night was ok and I slept well. Friday morning it was back to Torresdale for a Neulasta shot. The staff recognized me and asked me how my first night had been. They could not have been nicer or more comforting. On Wednesday I will see Dr. Kennedy for a follow up visit since this was my first chemo, then I will follow up with her about 2 weeks after treatment as a rule. On Friday and Saturday I will continue to take oral Emend and on Friday, Saturday and Sunday I will continue to take oral decadron. Who knows what Monday will bring. The Emend is to try to prevent nausea and vomiting but it doesn't work if it has already started so I have 3 other meds in my arsenal just in case...

All in all, better than expected...so far...I am grateful for that. Thank you for all your well wishes and prayers. And thank you for all of the gifts and comfort items - from the books to the softest socks in the world - I am loving all of them. Sue Sipos, that "bag of goodies" is really coming in handy about now so thank you so much for that. Anyway, one down and 5 to go....I'll keep you posted (get it?)...

Chemochemochemochemochemo

2008-10-15T07:55:00.000-07:00

Hi, it's me again. I finally have a start date for chemo - Thursday, October 23rd, God willing...This will give me enough time to finish up with the dentist - I'm in the final phase of getting 2 implants and it would not be good to have inflamed or irritated gums once I start chemo. Just for sport I think I will count how many times I say that word today (chemo).

I was thinking about how when people have babies one of two things happen. Either (A) their entire house becomes a playpen (I know you know these people) and their lives, including all of their conversations revolve around the baby, or (B) their baby becomes a cherished part of a family that has diverse interests and gifts. I want my cancer to be the baby in the second scenario. While it is true that I love my cards and books around me, and I do have some items around to make the chemo (9) experience more comfortable, and there are one or two pink ribbon items in sight, once I get into a rhythm, I hope that the cancer experience becomes just a part of a life that is filled with other things. Of course I will continue to inundate you with all of the cancer/non-cancer updates that are fit to print.

On the gratitude list for this week is a wonderful visit with a new friend, Anna Marie, the deepening of my devotional time, some fabulous rice pudding (thank you Bonnie), and all of you for supporting me by reading this and in your own special ways. I'll let you know how ...you know what....goes next Thursday...unless I write sooner just because. Thanks.

Cliffhangers?

2008-10-11T19:46:00.000-07:00

Hello, I've been waiting to blog until I have a date for my first chemo (I have to call Dr. Kennedy's office on Monday) but from what I've been hearing, some of you enjoy reading these updates and have been on the edge of your seats waiting to hear about the PET scan-Ultrasound detour. So here it is. I went for the ultrasound on Tuesday night, Oct.7th (the exact dates are for my memoirs), at 6:30pm. The earliest appointment had been for the 16th but once Kathy (in Dr. Kennedy's office) checked with her to see if that would be ok she came back on the phone and told me that I had an appointment for later that same day...the privileges of Stage 3...and a physician who is an amazing advocate.

I had to drink 32 ounces of water an hour before the test - and Hold it! For you menopausal and perimenopausal women out there - you know what an ordeal this was...hoping not to cough or sneeze...and for me, inhibiting all possibility of laughter. Fortunately this was going to be a...let's say...thorough...ultrasound and that is no laughing matter in my book. We arrived on time, I was taken in exactly at 6:30, and just before 7p.m. we were on our way to Callabrisella's (a mom and pop Italian restaurant in Bensalem) to unwind and enjoy three delicious entrees that would also serve as lunch the next day. By the end of dinner I had gone to the bathroom 3 times...

I spoke to Dr. Kennedy on Thursday and she said that everything "looked fine" and that there was a small fibroid that was probably causing all the commotion. I will be calling her office to schedule the chemo on Monday. I'm going to see if I can start on Thursday or maybe the following Tuesday, or maybe in the spring....just kidding...I have a few loose ends to take care of first....like getting the caps on my dental implants and other fun stuff. As soon as I know, you folks will be the first to know. (this blog is like a good cliffhanger...)

Until then,
Thanks.

A Little Snag...

2008-10-06T19:19:00.001-07:00

Hi...just a quick note...instead of "Your PET scan is clear, let's move on to the chemo," I got "I don't exactly know what this means but..." Translated, that means that "something" was seen on the PET scan concerning my uterus - technically, linear physiological activity. I will have to get a pelvic ultrasound before I start chemo. Hopefully this is just a fibroid and we can get on with things...

On a happier note... I was able to do some drumming at the Susan G. Komen Race for the Cure this weekend and I have to say that it is inspiring to participate in this event. I am attempting to upload some photos to the blog (for your multimedia enjoyment), including the giant mushroom, the think pink book club, and a "before" photo while I still have hair... (scroll down to past entries to see photos - 3 altogether up to this point)

Breast Cancer Awareness Month (and my PET scan)

2008-10-02T06:27:00.000-07:00

The irony is not lost on me that I had my PET scan and will be launched into the treatment phase of this journey just as we are entering Breast Cancer Awareness month. You can't miss it. I went food shopping the other day and got breast cancer paper towels. The Progresso Soup labels have a pink border, and just about every product is somehow involved. They are all contributing a portion of their proceeds to this cause. What a great concept. If you walk into a department store you will see Breast Cancer apparel. The attention to this particular disease is not new this year but I am seeing it and reacting to it a bit differently. Because now I am living it. It has always been a cause near and dear to my heart that I have supported - after all, my mother has been a breast cancer survivor since I was 10 and so many friends and family have been affected by it. But now I am living it. It is an odd place to sit. You have heard me joke about getting a pink wardrobe, but there is something powerful about being part of a group of extraordinarily strong women. I am at the very beginning of my road. I can't imagine the experiences that lie ahead but they will change and shape my life. I suspect that they will strengthen the connection with all women who have been told at one time or another, "You have breast cancer." But I want to remember this, I want to remember that I don't have to be "living" something in order to have real empathy. I thought I was pretty empathic and in fairness to me, I am - but I didn't always pay attention to the day in and day out "little things" that are not often spoken about when I have had conversations with folks who are dealing with catastrophic illness. We would talk about the "big" things mainly, so I didn't really have the whole picture. So the learning is beginning for me. I hope to do some writing other than this blog that I can reflect on and use and perhaps even share with others. I am just glad that it is not Irritable Bowel Awareness month because wearing a T-Shirt or eating food labled "irritable bowel awareness" would just be awkward...

And now, where were we...the PET scan...I had to eat high protein and low carb the day before the test which is not that difficult to do except that if I have restrictions placed on me I need to rebel. I really wanted ice cream. But I am a compliant patient...chicken and water...I had the scan done at Frankford-Torresdale in a trailer that drives onto the parking lot every Wednesday and every other Thursday. They were ready for me as soon as I got there and had to check my blood sugar with a finger stick. It was fine so they went on to the adventure of finding a vein to inject the radio active substance into. I will spare you the details of that process...can't use the port for this...argh. Then I had to be still and quiet in a darkened space in a lounge chair for 45 minutes (all the comforts of home...)When it was time they made me go to the bathroom to empty my bladder (of radio active urine) and then lie on a table. Since both of my arms are not able to go over my head to the extent that they wanted (like the double jointed contortionist in the circus), they strapped my arms to my side and told me that I could breathe throughout the test(good news) but I couldn't move(not so good news). The test was going to scan first and then scan 6-7 sections incrementally for 6 minute intervals each. Just for sport I thought about what it would be like if I had an itch somewhere and then I thought that that was probably not a good idea so I concentrated on my physical, emotional, and spiritual feelings, which usually in these situations have been feelings of being surrounded and held by God - seriously. The thing I liked was that when we started, the tech Mark (who is in another room) said,"Can you hear me?" I said, "Yes." And then he said, "Good, I can hear you too in case we need to talk to each other." And then I didn't hear another word from him until the scan was done. Usually the techs are so chatty - "You're doing great", "How are you doing, Susan", "Only 3 more to go", "last one", etc. Comforting at times, but breaks into my prayer time. When I was done, they burned a CD of the scan for me and that was that. The scan is in the computer system for Dr. Kennedy to see at any time but I am sure she will wait to hear the radiologists reading before she gives me the results.

After we said good-bye to Sue, who was still at the hospital with patients, we went to take a picture of the giant mushroom to upload to this blog...it really is a "must see". Unfortunately, due to the rain (and Sue S kicking it over) it is no longer white. It is a brownish slimy thing but hopefully, you'll get the picture. Then we went to Dairy Queen for the last time this season. As a matter of fact, they put out their "Closed for the Season" sign right after we got our order...endings and beginnings...

Well it is an absolutely gorgeous day today so I am going to try to get out and enjoy it. I will write more as the spirit moves me and let you know the PET scan results and when chemo will start. Thanks for listening...thanks for everything...

Catching Up

2008-09-27T06:10:00.000-07:00

So, I wasn't going to blog until next Wednesday after the PET scan but apparently even in blogging I'm long-winded and chatty. On Wednesday the 25th I went to Frankford Bucks to try to have my blood drawn. As per Dr.Kennedy's suggestion I asked for the person in out-pt lab who had been there the longest. That would be Vicky. She was at the hospital when it was still Delaware Valley and Dr. Kennedy was just a resident. I stayed true to myself and was still the most difficult stick she had seen. At one point I asked her what would happen if they just couldn't get the blood. She responded," I don't really know because it has never happened." Although she was a little older by the end of the experience, Vicky was amazing and managed to get all the blood we needed from two different sites. I was relieved.

Then we went to book club where everyone wore pink in my honor (Sonya even wore a robe and slippers because that's what she had in pink). And we had pink food - salmon, shrimp, macaroni, raspberries, pink champagne, cosmos, pink lemonade, pink cupcakes with breast cancer ribbon icing....It was good to see everyone and I appreciate the gesture and the gifts - favorite children's books and cancer "goodies" - more than I can tell you. Thank you, Tracy, for hosting, and thank all of you for being there and for continuing to support me.

On Friday, the 27th, we got to Frankford Bucks at 7am for the port placement. (All the bloodwork was fine by the way, and I had gotten a call telling me that the mugascan results came back and that everything was a "go" for chemo so far - except, perhaps, for my emotional state...) My nurse, Lynda, started my IV on the first stick(!) (Thank you God) and the procedure went along without a hitch. I was awake but numbed and sedated and they told me that the drugs usually have an amnesiac quality to them. Maybe so, I don't remember many details of the procedure but I sure can tell you all the details of one of the staff member's son's ankle surgery...I have one of those faces...people just want to tell me things...

So now I have a Power Port. Apparently this is something new. I have to carry a card in my wallet and I even have a bracelet and something for my key chain if I want. Not only can it be accessed like a regular port, but with a special needle it can be used for CT contrast, etc. I am hoping that this will make my life a little easier. I have the PET scheduled for Wednesday, Oct 1st, I want to get my hair cut and go to the dentist before chemo starts, and maybe get a few things squared away at the practice and the Sharing Network...the juggling is getting easier.

More next week....unless I can't sleep...

Tiny Veins and Giant Spores

2008-09-23T15:35:00.000-07:00

Hello...I thought I would drag myself away from shopping for hats online to write a brief update. Yesterday I went to Frankford Torresdale for my mugascan. At the desk the receptionist asked me to sign some forms for release of information, etc. She handed me a clipboard and I proceeded to sign the necessary forms...well...she looked up at me and said, "Oh, just one form...oh..." Apparently I had signed all the forms on her clipboard... thereby giving my consent for everyone to have a mugascan into the new year - huzzah! (Luckily, I am not the first person to do this so ther were only about half a dozen forms there - I like to use poetic license...)

Then came the mission impossible search for a vein. I needed two injections 20 minutes apart, with the second one containing a radioactive substance so that they could take pictures of the chambers of my heart. It was tough but they were finally able to get both injections into my hand. It's even harder now since they can only look on my left side. When I went into the scanner, the techs couldn't see anything. I was wondering if that had anything to do with the fact that I couldn't put both hands up over my head like they asked. (They had finally told me that I could put one up and one down) But apparently they couldn't see anything because "it" was taking a longer time since they had to inject "it" into my hand. I offered to hold my hand up and pump and that seemed to work. The whole process took about an hour and a half. We went to DQ last night after dinner to celebrate.

Today we went to see Dr. Kennedy to talk about chemo. I learned more about chemo than I ever wanted to know. My particular drugs are pretty powerful and have potentially many side effects. Luckily there are medications to try to prevent or stay ahead of these side effects. I got about 8 presciptions. I will lose my hair and there is nothing to do about that except to find some comfy head coverings. I'll take medications at home before and after each treatment - which I will receive over 4 hours or so as an out-pt every 3 weeks. I'll start the chemo when all the test results are in. The mugascan results are not in yet and I still have the PET scan scheduled for next Wednesday (keep a good thought for that one because I really don't want to move into stage 4...)

I had to have blood drawn today for the port placement scheduled for Friday. After 7 "extended" sticks we all agreed that I would go to Frankford Bucks out-patient department tomorrow and have them try. I am glad I'm getting a port...

The most memorable part of the trip was seeing a GIANT Mushroom on the edge of Dr. Kennedy's parking lot. It was the size of a basketball and there were more just like it in the woods nearby...I think I saw this one on Alfred Hitchcock Presents...more later...as always - thanks for listening.

Next On the Agenda...

2008-09-19T17:38:00.000-07:00

Hello...I'm back. Well, after that last blog I had to take a breath and have a long talk with God. I am happy to say that not only are we still on speaking terms (me and God), but that our relationship is stronger than ever. The author Anne Lamott says that there are really only two prayers -"Help me, help me, help me," and "thank you , thank you, thank you." I have been praying both of those prayers non-stop for some time now. I do feel the presence of God and I am comforted. Earlier in the diagnosis I actually felt the presence of my grandmother and that was comforting as well.

Today was a red letter day for me - I got my last drain out!! Many of you have seen me catch a piece of clothing on a door jamb or on the back of a chair, etc. Well imagine how nerve-wracking it was for me to know that I was always just a hair away from catching that tubing on something. Just thinking about it now makes me cringe. So I went to Dr. Simmons office (she was not there...I am assuming that she was home enjoying her new baby boy) and her nurse Cindy did the honors.

I did spend a beautiful day down the shore after all that, and when I got home I started in with the next round...I am scheduled for a mugascan at Frankford Torresdale on Monday the 22nd to make sure that my heart can handle the chemo - hope there are no surprises there...I know they have to inject dye and I have to be able to put my hands over my head so I am already starting to hydrate and brush my hair incessantly in order to strengthen my arm... On Tuesday, the 23rd, I have an appointment with my oncologist, Julia Kennedy, to discuss what chemo will look like for the next 5-6 months. Then on Friday, the 26th, I will go into Frankford Bucks and have a port put in. On Saturday, Susan is riding her bike 75 miles - city to shore for MS, and on Sunday I'm planning to go to a wedding. Then on Wednesday, Oct 1st, I'll have a PET Scan and then I can relax until chemo begins (which will probably be 20 minutes after I get out of the PET Scan...) So, I don't know about the rest of you but my calendar is full. Even so, Mauri, if it is at all possible I would love to be your poster child drummer at the Susan G. Komen Race on Oct. 5th. I can't call myself a breast cancer survivor yet but I think that is just a technicality...(power of positive thinking).

I'll be back next week, if not sooner, to tell you about all my adventures. Until then - Thank you, thank you, thank you...

What?? I mean What??

2008-09-11T15:24:00.000-07:00

OK...so...we're back from the breast cancer team meeting. As you may remember, my biggest concern was around the staging of the cancer. We had felt that it would be Stage One or if the tumor was bigger than 2 cm then it would be stage two (as long as the lymph nodes were clear). Well, according to the pathologist, the cancer measured 8.5cm...clearly a shock to us all - including Dr. Simmons who said that she promptly called the pathologist and asked that the "typo" be changed. She said that he called her back within minutes and said, "I don't make typos." I said, "My whole breast does not measure 8.5cm..." Anyway, in that moment, I went from joking about wearing too much pink, and learning to feel what it's like to be a person with cancer (cancer patient?), to "Yikes, I am in a real fight for my life." (No melodrama intended) This puts the staging of the cancer at a Stage 3...

There are some positives though, we found it and I had a mastectomy - I owe my life to Dr. Canavan's persistence in the face of negative studies, the sentinal node and the lymph nodes are clear - BIG Plus, and there are one or two others that have to do with hormones, etc. that don't mean alot to the average person without detailed explanations.

So, here is what I know. Dr. Julia Kennedy will be my medical oncologist. She saw me as a second opinion for the fake lymphoma two summers ago and has the results to my PET Scan, etc. from that time that were all negative. Some of you may remember that I even had a bone marrow biopsy at that time. I really like and trust her. I really like and trust the whole team. She will be arranging some tests for me (CT/PET scan, mugascan) and I will have a port put in so that I won't have to be stuck a million times for bloodwork and chemo. I'll start chemo in mid- October. Dr. Kennedy said she'll give me the details when I see her in her office but I will be getting a combination of Toxotere, Adriamycin, and Cytoxin every 3 weeks or so for a period of 20-24 weeks (5-6 months (!) those of you who are doing the math) This will be followed by tamoxifen and then femara.

Then I saw Dr. Eric Gressen who is my radiation oncologist. His sense of humor is a good match for mine. Once the chemo is over, I'll have 5 weeks of daily radiation. Then, if Dr. Simmons has had her baby by that time...(actually, she is scheduled for a section tomorrow at 10am, so please keep her in your prayers), then I will have another mastectomy with simultaneous reconstruction of both breasts. Dr. Simmons said (and we all agree) that she would never feel comfortable telling me that everything was okay with the left breast considering how many curves were thrown our way with the other one. Also, most of the people in my family who have had breast cancer (and there are many) have been diagnosed with cancer in both breasts at some point so this makes sense to me. She said that if all things go in our favor I should be stepping back into the world treatment free (except for tamoxifen,etc) by this time next year. Then I got rid of one drain and kept the other till probably next week.

Hmmm...This is a lot of information for you and for me...so I think I need to take a breath and regroup a bit. I am grateful for all the positives, I am grateful for all of you, and I am grateful for my sense of humor that still seems to be intact - I'll need all of these and more before this journey begins to wind down. I need to keep writing and I need you to keep reading. Other than that, your prayers and good wishes are always welcome. Thanks for listening...

One Week Post-OP

2008-09-10T10:04:00.000-07:00

Hi! Just a quick update - I was able to go to JFK yesterday to be evaluated for certification as a Clinical Chaplain. I was there from 1pm to 3pm but I was finally recommended for certification. (I only had to use the cancer card and pull out my drains once...). This is a big weight off my shoulders. Now, at whatever point in the future I'll be able to work regularly again, I'll be able to get a job. I was exhausted afterward but I think I would have been under any circumstances. Tomorrow I have my post-op appointment with Dr. Simmons (who apparently didn't have her baby yet...) I get to meet with the Breast Center Team - medical oncologist, radiation oncologist, nutritionist, plastic surgeon, etc. They all review my case and offer me options. Thank you all for your continued prayers and well wishes. I am enjoying the drawings, flowers, plants, fruit, cards, blog responses and e-mails. I've heard from some of you that it has been hard to post a response to the blog. You have to create an account first (free) so that just anyone can't post an inappropriate response and not be accountable. If you're still having problems let me know and I'll have someone who knows what they're talking about (clearly not me) walk you through it. It has been very helpful to read your comments (and song lyrics...) More tomorrow after the doctor's appointment...

More from the Uniboober...

2008-09-04T06:53:00.000-07:00

Anyway, where was I, Sue went to Goodwill and bought me some Large men's shirts that button down the front so that I could cover all my paraphenalia. Col's become an expert with the drains (it takes a village...), and Mary Lou came over to visit and to accompany us to the graduation (or to stay with me if I wasn't up to it since Colleen is doing the invocation and the benediction) I slept a little in the afternoon and then we headed out to the Keswick Theater. I saw Dan Fogelberg play there in his last east coast concert before his testicular cancer diagnosis. (Hey - I have a captive audience - sad, but you are reading whatever I choose to type...I'll try to be selective) Thank you to everyone who showed up to support Sue - Mauri, Lorraine, MaryLou, Liz, Tara, John, Joe, and especially to Colleen for doing the prayers - they were perfect. Sue worked really hard and it was nice to be able to celebrate her achievement with her. Sue also won the Board of Trustees Award for Excellence in Nursing. It was a standout moment that I didn't want to miss. It was my intent to update this blog when we got home but apparently I fell asleep with my hands on the keyboard...

I only woke up once or twice so I am well rested this morning. I plan to to nothing much other than resting until my next adventure.

Oh, I forgot this part. The sentinal node was clear! yea! Which is good news. Dr. Simmons took out more lymph nodes and sent them to pathology though. Since she did a mastectomy she won't know the size of the cancer until the pathology report comes back in about a week. Then she will be able to stage it and move on to the next level of treatment. If it is over 2 cm then Stage 2, under 2cm, Stage 1. There was some talk of anti-hormonal medication but more on that after my post op appointment. The pain pump will be taken out by us (!) in a day or two, and the drains will be taken out in the Dr's office next week. Thanks for listening...

Introducing the Uniboober

2008-09-04T04:53:00.000-07:00

Hi! I'm back! Interesting detour...We had a great weekend at Colleen's folks - great food, great company and Susan learned to paint strawberries, ladybugs and snowman faces. I lounged at the pool and even went for a boat ride (thanks John). Monday night I had to stop eating and drinking by midnight. Usually if you tell me I can't do something I want to do it all the more but I was prepping for surgery. Butter Pecan ice cream was my "last supper" at 10:30 pm...we won't mention the goodies we took home from Sharon and Tim's. I read and listened to all your well wishes. Know how much they make a difference. Before this I knew that they were a nice thing to do but I didn't realize just what an impact they have. And thank you Mauri and Lorraine for the beautiful song (to the tune of Bye Bye Blackbird...well you get the picture...) Tuesday we were up bright and early and in Frankford by 8am. The surgery was scheduled for 10:15am but I wasn't taken in to the OR until almost 1. The waiting was hard. Once I got there I just wanted it to be over and on the way to recovery. Everyone was really lovely but the anesthesiologist could not wrap his mind around how I could not possibly be pregnant. He wanted a urine specimen even after I told him that I was gay. He said that, "Women can get pregnant till they're 60 years old and it was not an unreasonable request"...I told him that by "gay" I didn't mean happy (necessarily, but of course I am happy...maybe not on that day but usually....) He had a Russian accent and I was thinking that maybe something got lost in the translation. He remained stern but I didn't give a urine...Then he couldn't find a vein to start an IV and began sweating. They opted to bring me in to the OR without one and put a gas mask on my face and get one there. He got to push the stretcher with the Nurse Anesthetist and was explaining to her all the while that it wasn't his fault - that it was just my veins. Perhaps true, I was a little dehydrated, but it interfered with my loving thoughts and positive imagery that I was trying to bring with me into the surgery. After he bumped the stretcher for the second time in the doorway to the OR I looked at the nurse and said, "It isn't his gift." She started laughing and he walked away in a huff. I went to sleep knowing that this was the person who was going to wake me up after all was said and done...maybe I shouldn't have been so hard on him...

I woke up in the recovery room somewhere around 3 o'clock (there was a clock on the wall) And by 5-5:30pm I was in my room. I had a foley catheter, nasal cannula, IV, two drains and a pain pump. And truthfully, I felt better than I expected. I asked for some morphine (they told me to stay ahead of the pain) and I felt great. That was the last pain medication I needed - the pump really did its job. Susan and Colleen were great and learned how to empty my drains (although I think Susan already knew having gone to nursing school and all) By 10:30pm I was asleep and slept well for a few hours at a time, just waking up for vitals. The nurses and CNAs were amazing. They were upbeat and responded well to my humor. Now I don't want anyone to get the wrong idea and think I'm living in denial - I had my prayer time and my healing meditations and my ongoing grieving for the loss of something near and dear to my heart, but those of you reading this know that humor is my hallmark. When my cousin Joey had a kidney removed due to cancer I brought him a can of kidney beans. That broke the tension and allowed us to really talk. Now back to my story.

Wednesday morning I knew I was going to be able to talk my surgeon into letting me out early to go to Sue's Nursing School Graduation. By 6am Angela (great nurse) had pulled everything out except the pain pump and drains. I was beginning to feel like myself again. Sue was with me before graduation practice and Colleen was there to see the reaction on Dr. Simmon's face. I was the healthiest-looking cancer patient she had ever seen (in part due to the lovely tan I got this weekend). I had done everything on the list I needed to do before they would consider discharge - I peed on my own and I ate something solid (if you consider a pancake solid). I was home before lunch -less than 24 hours after surgery. It is amazing to me since I remember my mother's surgeries requiring a much lengthier stay. I'm going to post this and then continue my story.

Surgery Scheduled

2008-08-29T12:39:00.000-07:00

Just a quick update before we head out for the weekend to let you know that surgery has been scheduled for Tuesday, September 2nd at 10:15 am at Frankford Torresdale. The second surgery will be scheduled in about a month. Keep you posted. More Monday.

The saga continues...

2008-08-27T14:01:00.000-07:00

Post#2

Hello again. I am overwhelmed by all of your posts and e-mails and phone calls. I can't tell you how much they all mean. Here's what's been happening. I went to see Dr. Gottlieb (plastic surgeon) about recontruction options on Tuesday, August 26th. Ideally, I would have wanted to have all of the surgery at once so that I could just begin the business of healing, but it looks as if that is not going to happen. Drs. Gottlieb and Simmons got together and could have cleared their schedules for this Friday if I had wanted to do the reconstruction with implants. I am actually going to have reconstruction using my own tissue - muscle from my abdominal wall. This surgery takes 4-5 hours, requires a 5 day stay in the hospital, and has a recovery time of 6-8 weeks. Since this requires blocking off an OR for so many hours, Dr. Gottlieb said that he would not be able to do it on Friday and is not available next Tuesday or Wednesday. After that Dr. Simmons will be preoccupied having her baby. So I opted to have the mastectomy first, recover for 3 or 4 weeks, and then have the reconstruction. I was happy to think that I would have the surgery on Friday, because then I would definitely be able to go to Susan's graduation next Wednesday. I was a little sad however because we were supposed to spend the holiday weekend with Colleen's parents. In true "just when you thought it was safe ..." fashion, all plans changed again. Since I am going to have the reconstruction at a later date, Dr. Simmons didn't have to bump her Friday surgeries for me. So I am scheduled for surgery on Tuesday morning (Sept. 2nd) I have tentatively talked Dr. Simmons into letting me leave the hospital a day early (with the understanding that I would be surrounded by nurses) to go to Sue's graduation. Her office manager said that I would have to sit in the back seat "in case...you know..." I said, "What?" "Well, in case you had an accident you wouldn't want to be anywhere near the airbags." No, I wouldn't want anything between me and the windshield except a snug seatbelt...So now I'm looking for prayers for traveling mercies as well as for the surgery itself...

I was surprised and delighted when Col and I took a ride into Princeton to have lunch with Amy (one of my CPE colleagues) and were met by Amelia, Grier, and Eric as well. The only one of us that was missing was Laura, who is in South Carolina, and she was with us in spirit. As Colleen observed, "Nothing like cancer to bring a group together..." Eric, who has had to put up with countless conversations about "women's issues", was confronted yet again with a new challenge. He rose to the occasion beautifully. Group prayer at Panera's rounded off the lunch.

That's all for now...we'll be away for the weekend, back Monday. Monday evening we hope to have an intimate prayer circle...to say, "Bye bye boobie." (MaryLou, I can hear your groan from here) Thanks for all your support.

P.S.

2008-08-25T20:16:00.000-07:00

P.S. - Since I have no idea how to create blogs...Colleen helped me with this. Acre100 is her e-mail not mine...technology....

In the Beginning....

2008-08-25T18:54:00.000-07:00

Post #1

Hello, welcome to my new blog. If you are here then you know by now that I have been recently diagnosed with breast cancer. Can you imagine? Well at least that cuts down on my anxiety about how I will ever find a job as a chaplain - at least for a little while. A few months ago in a routine breast self-exam I found a lump and a dimpling in my right breast. I went to see Dr. Canavan, the oncologist that I have been following up with for that "fake lymphoma" scare, and he sent me for a mammogram and an ultrasound. They were both negative but he told me that he was "unnerved" by what he had felt and wanted me to have an MRI and to see a breast surgeon. I went for the MRI (which was read as negative) and made an appointment with Dr. Jennifer Simmons (at Frankford Hospital - where Sue works - in Philadelphia). I am nothing if not a compliant patient. I saw Dr. Simmons on Tuesday August 19th and she did an exam and pulled out her ultasound machine. I felt her demeanor change and by the time she told me that she wanted to do a biopsy I pretty much knew what the results would show. On Friday, the 22nd, she called to tell me that I had breast cancer. It's interesting how time can actually stop for a few moments. Anyway, I had the weekend to sit with this information and today, Monday August 25th I had another appointment with Dr. Simmons. Susan and Colleen came with me. She could not have been nicer. She explained everything, all my options, and left whatever time we needed to ask questions. She showed us the MRI, which she did not read as negative and said that she would go over it with the radiologist...she has been working to have breast dedicated (specialists) radiologists reading these kinds of films for just this reason. I have what is called Invasive Lobular Carcinoma and we won't know the stage until after my surgery when we see if the lymph nodes are positive. Based on size alone it is between Stage I and Stage II. (I personally am thinking, "Exit, stage left...") One of the challenges to scheduling surgery is the fact that Dr. Simmons is pregnant and set to deliver her second child perhaps even as I am writing this. She is not comfortable planning any surgeries after next Wednesday so mine (mastectomy) will be scheduled sometime in that time frame. We have an appointment to see a plastic surgeon tomorrow to discuss reconstruction options (I didn't realize there were so many) and to set a date for the surgery. These two Drs. work together during surgery and when Dr. Simmons is done, Dr. Gottlieb will still have another 3-4 hours to go. So much for the facts up to this point. I got the idea for this blog from my friend Bev who said that it is an easier way to keep people up to date than having to field phone calls and repeat the same information. I agree. And it will also give me the opportunity to write about my experience. I would love to hear from people so please send your comments to this blog, e-mail, etc. I can use all the prayers and good energy I can get. The few people who do know this information already have asked me how I am feeling. I'm really feeling okay at this point. I think I will heal and do well. I have confidence in my doctor and wonderfully supportive friends/family. The only thing that I am a little anxious about is the staging. And I am sad that I might miss Sue's Graduation from nursing school. Oh, and I am scheduled to sit for my certification as a Clinical Chaplain on Sept 9th...so wish me luck...Thank you in advance for your support and for caring enough to read this. Just keeping you abreast (hee hee). More later......