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

Hope everyone had a happy Thanksgiving! I remember last year at this time...losing my hair, contemplating nesting for the winter with chemo and radiation ahead. This year is different in many ways but the gratitude is the same. I think that I am more conscious of just how sick I was with the chemo "day fives" and the pneumonitis from the Cytoxin, the size of the cancer in the one breast and then, surprise, another cancer (undetected) in the other. Last year I was aware of all this but I got through each day the best I could. It is only now when I have more energy and am out and about more that I am beginning to fully realize the impact that the cancer and the treatments have had on my life. I have new perspectives. I carry my experiences with me and in some ways they influence everything I do. I am not the same person I was before this diagnosis. (Although I may be even funnier than before...I'm just saying...)

I am hoping to return to work in the new year, but return where? I may be able to put some time in with the Sharing Network when I have enough stamina, I will continue to work with a few patients from the practice that I have been having phone sessions with, only now I will try to see them in person for at least one out of the two monthly sessions. But I am not sure where I am being led or what kind of work is out there waiting for me. That is frightening in this economy but it is also a little exciting. Maybe I will be able to work as a chaplain in an oncology practice close to home, maybe in a new hospital that is presently being built, maybe there will be an opportunity I haven't even imagined yet.

I have shared with some of you that I am reminded of that exercise that we "had to do" in so many of the psych classes I have taken...the one about trust. The one where everyone gets into a circle and the person in the middle has to close their eyes and let themselves fall backwards, trusting that the group will catch them and not let them fall. Not once was I ever able to do that. But I do think it is an important lesson to be able to give up some control - we really have the illusion that we have control over our lives. Life happens. I think that what we have control over is how we choose to respond to life experiences and how we choose to interact with one another. So giving up some control and trusting that I will not fall are
two of the life lessons that have come out of all this. What I couldn't do in a classroom I have learned to do with God. I trust that God will hold me up no matter what comes my way. I have chosen to respond with humor and reflection and prayer. This is not a linear process. It is very hard.

So we are now into Advent...once again life is about waiting, or maybe really about anticipation which is much more joyful. Yesterday was December 1st. Last year I was hospitalized for the pneumonitis on that date, 30 years ago on December 3rd my mother had her second mastectomy, but this year that date will be remembered as the date I had yet another surgery in this cancer saga.

To give you the short version, this surgery was to remove the "bricks" they call "expanders" and to replace them with silicone implants. There was also some other reconstructive work like fixing the ends of the scars on my back, etc. We left the house at 7a.m., arrived at Frankford (Aria) at 7:30 and I was in the OR by 8:30 and home by 3p.m. with 2 drains, a pain pump with a dilaudid chaser, and a new bra to be worn around the clock for the next 2 weeks. I met a man in the recovery room who sang every Christmas Carol he could think of while profusely apologizing to anyone who wasn't Christian, saw more exposed bodies than I cared to see, and "made suggestions " to the staff as to how they might improve their sensitivity to patients' needs...

Dr. Simmons stopped by to say hello and it was a good thing she was there. After Dr. Gottlieb had left, I got up to sit in a chair (mandatory if you want to go home) and my nurse noticed that my gown had "quite a bit of blood on it." She called Dr. Gottlieb and I would have had to wait some time for him to come back before I could be discharged but Dr. Simmons said that she would take a look to see where the blood was coming from. She determined that there had been some blood that had pooled and come out around one of my drains and that it was no big deal. She repacked everything and I was on my way. I'm having some pain - especially when I move my arms, but for the most part the pain pump and the dilaudid are taking care of that and I am trying to stay ahead of the pain. Today I have an appointment with Dr. Gottlieb at 3pm and if I feel up to it I may go to the midweek advent service/pasta dinner at the church. I also have another appointment on December 15th with Dr. Kennedy - but I will keep you up to day and take them one at a time.

If this post seems a little disjointed just remember that I am on the "good meds". I hope you all take some time for yourselves during this busy holiday season. Stop and reflect. Anticipate all the good things that are yet to come. Many blessings to all of you.

A New Post...

Hi, it's been a long time...I didn't think too many of you were still reading the blog until I had a gap in the posts. Thank you for wanting to read more. The picture you see is me a little over a year ago, drumming at the Komen Race for the Cure. So much can happen in a year. I have a lot to tell you (duh) so let me begin with the facts.

I left off shortly after the second cancer was discovered in my left breast (the "just in case" mastectomy...). Among the tests that were done on the tissue was an Oncotype Dx which is relatively new and used to predict recurrence and to assess the benefits of chemo. Since this was a new primary we couldn't generalize from the other cancer. With the other cancer we didn't have to do this test because chemo was indicated by its size (8.5 cm) and staging (Stage 3). Anyway, good news! I scored low for the recurrence of the second cancer so we are not doing chemo right now and we will proceed with the hormonal therapy. Yippee!! SO SO happy - you have no idea!

So, I was on Tamoxifen for about a month and when I saw Dr. Kennedy she was satisfied that I was in menopause so she gave me a break from Tamoxifen while I got a bone density scan. Then I began Femara. I did not have any side effects from the Tamoxifen that I knew of (I always have hot flashes that turn me bright red and drench me...) but the possibilities included blood clots, DVT, etc. and I am happy to be moving on. The Femara seems to be ok and the big risk with this drug is bone loss, osteoporosis, and possibly "bone, joint, muscle pain". Dr. Kennedy says that sometimes this gets bad and folks have to be changed to another med but so far so good. Maybe this is because I have a high pain tolerance or maybe it's because I have just gotten a little used to having pain in my shoulders and knees, or getting out of bed or standing up slowly, or not being able to carry heavy objects, etc. Healing takes time and sometimes compromise. So now I am taking Levoyxl, Zocor, Zettia, Femara, a multivitamin, Co-Q10, Calcium and Vitamin D3, Glucosamine, and whatever other analgesics, etc are needed in a day.

Moving right along, let me just say one thing about the "expansion" process....it is not pretty...I explained this process in the last post so I am not going to go through it again here. Let me just say that the side with just the expander is fine...you go through the expansion, some minor discomfort and then you can have the expander surgically removed and the silicone implant inserted (which hopefully is softer than the expander which I can only describe as .....do you remember the hard plastic cosmetic bags that you can get at the dollor store? or Newberrys if you are my age...) Now, the other side....is another story. My right side has the Dorsi flap from my back..remember the muscle, blood supply, etc. being pulled under the skin under my right arm to create a flap where the radiated skin was removed? That was fun. Anyway, the expander on that side is under muscle which doesn't like to stretch and expand...neither does the muscle under my arm or on my back. The expansion process on this side was more difficult for me because it was painful - usually for a day or two after expansion but the last expansion was very painful for about a week. Today is two weeks since the last expansion and I can say that I am feeling okay but not great. Because of the pain I don't move my arm as much and I have to force myself to do this or my shoulder has more pain. Knowing what I know now, if I had to do it over again, I would have to think long and hard before I would consider reconstruction with a flap. I am sure they will look fine in the end...but who cares? I am much more than my boobs. I just didn't want to deal with prostheses...but who said I'd have to? Every woman has the right to make whatever choices are right for her. I guess I just don't have strong feelings one way or another. I just want the pain to go away and my mobility to increase. Little by little.

The big day is next Tuesday, December 1st. Out with the "hot pockets" in with the silicone. I'll let you know when I have a time. Today I have to go get my port flushed and pre-op bloodwork drawn. Then I have to go to see Dr. Gottlieb for my pre-op visit. With all of this going on I thought it was funny that I experienced a little dread at going to the eye doctor last week...I was actually whining (!) "I don't want to have my pupils dialated..." I am looking forward to some peace in the weeks following this surgery.

That is what has been happening here. If I've left anything out I will insert it in some awkward place in a future post. I'm going to end this post here and I will continue with further reflections in my next one....coming soon....maybe even by this evening! Thanks again for asking me to continue with the blog.

Water Balloons and Cancer Cells

Shall I talk about water balloons or cancer first....hmmm...well, let's talk about cancer because I don't really know too much more than when we last spoke. I did talk to Dr. Kennedy on Tuesday, September 8th, the day after Labor Day. She is going to run one more test on the tissue and then we will set up an appointment in a week or two. She said that this cancer is another "primary" which means that it did not spread from my other cancer or anywhere else. She also said that this cancer did not develop after chemo stopped - it has been there throughout treatment - the chemo may have decreased its size or it just may not have responded to it. There are so many things to consider and I have a lot of questions but I feel confident that they will be answered. The problem is that I am not feeling very patient at the moment. Dr. Kennedy is going to go through my whole chart, scans, bloodwork, etc. from the beginning. She says she needs a little time to "chew on this" and, God-willing, I'm not going anywhere - so chew.

I will also see Dr. Simmons at some point and I am going to ask her to look at my MRI again. I have no doubt in my mind that she has already done this but I just want to see for myself. You remember way back when, when the radiologists everywhere read all my scans as negative? Well, Dr. Simmons was able to look at my MRI herself and she read it as positive. She saw the cancer in the right breast even though we were all surprised at just how much cancer there was. (8.5 cm). I know she looked at the left breast too, but maybe now that we know exactly where the cancer was (in what quadrant) in the left breast, we can see if there was any evidence at all of its existence when that scan was taken. Not that it makes any difference to anyone but me. Having seen it then wouldn't have changed anything in terms of the way my treatment has progressed.

Now on to water balloons. (saline balloons?) I've had weekly appointments with Dr. Gottlieb since the surgery (with the exception of this week). On Tuesday, September 1st we began the expansion process...Dr. Gottlieb moves magnets over the expanders and then marks "the spot" by making a little "x" on my skin with his sharpie. Needles are put into the expanders and they are filled with saline until you can't take it anymore....(just kidding, the actual phrase is "Let me know when you've had enough" ) He said that he would only fill them up to a certain amount anyway so that I wouldn't call and yell at him the next day. The side with the dorsi flap from my back (aah, I bet you already forgot about that didn't you? Well I can assure you that I haven't) took more saline than the other side did. This is normal and I am told that I will be amazed at how all this is going to look at some point in the future. Uh huh.... right now besides healing tissue and healing scars I also see the turquois tatoos (I really meant tatoos) from radiation, and now I have 2 little x marks the spots. Very attractive. Like a treasure map... but Dr. Gottlieb has shown me photos of his work (some have scared me but most have inspired me) and I trust him when he says, "Trust me". Call me crazy. All I know is that I'm alive to tell about it and that is all that matters to me. Really. I am not kidding. So I'll go back for some more of this fun in two weeks... There was a woman in his office that had a great T-Shirt on that said, Of Course They're Fake, the Real Ones Tried to Kill Me. I may have to get one of those T-Shirts. That, and My Hairstyle is Compliments of my Oncologist. It really looks crazy now. If I had some fig leaves I could be Nero...

It's cool today, very fall-like, and I am reminded that soon the Dairy Queens will be closing for the season again (except for the ones that Tracy told me about). Time flies whether you're having fun or not. But, all joking aside, I can't believe that I have spent over a year of my life doing this. Luckily it has not only been this, it has been so much more. It has been full. I have been filled - with hope and faith and promise and love. And also with sadness and anger and loss and grief. As I said, full. When I look back I don't think that I would ever have the energy or strength to do that again, but if I knew what this next year holds I would probably say the same about that. And I will get through this next year. Whatever it holds. I know that. I've learned that. Day by day....sometimes hour by hour. The strength comes. The "healing" comes - sometimes physical, sometimes emotional, sometimes spiritual. I like it best when it is all three at once - which is extraordinarily rare. There are moments when you really do feel surrounded by the "white healing light which is the love of God". And I am grateful for the people who continue to walk with me and hold me up when I am too tired to do it myself. I thank you all.

So now I have to nap. I can whine and try to stay awake but that is not pleasant. I find that when I am really tired and ready to go to sleep for the night I am very funny. I have this stream of consciousness, running monologue thing going. I need to get one of those DVRs (Digital Voice Recorders) It'll be good for the book...or it will give the editor a good laugh before he/she slashes away at my words. Anyway, more later...feel free to share your own stuff...

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

The status on my Facebook right now says, "If you can laugh at it, then you can live with it." In my opinion, this is one of Erma Bombeck's gems. (of course my cousin Kathy's immediate response was "that's the way I think about Pete" her husband.)

To me humor has always been a saving grace. I grew up in a family that uses humor not only to cope and heal, but to celebrate life as well. We laugh at anything and everything. Sometimes this is disconcerting to those who do not know us well. I think I mentioned in an earlier blog that my cousin Joey had his kidney removed due to cancer many years ago. Of course that word raises all kinds of anxiety but when I brought him a can of kidney beans when I went to see him in the hospital we laughed, the tension broke, and we were able to talk. Shortly after my diagnosis I was talking to Joey on the phone and he said that he had a gift for me. Comfy socks? Healing CDs? Aromatherapy hand lotion? Nooooo....two cans of evaporated milk.

This is the family I come from. And I wouldn't have it any other way. I like shouting over each others' voices to be heard when telling family stories and having at least 2 people tell different versions, and then laughing until your stomach hurts. Some stories are just plain funny, and others are of the "you had to be there variety". My cousin Margaret and I can laugh until we cry when we hear someone say, "Here today, gone tomorrow," because under totally inappropriate circumstances (as her aunt was being taken away in an ambulance) Margaret's mother nonchalantly commmented, "Well, here today, gone tomorrow."

But I have to say that my mother is the most naturally funny person I know. Anyone who has spent any time with her at all knows this to be true. It is not just that funny things happen to her (all the time), but she can tell a story with perfect timing and facial expressions that put her in league with Lucille Ball and Gracie Allen, and Carol Burnett. I'd like to share one of my favorite stories that took place quite awhile ago. I am sure that it will lose something in the translation by writing it down but....years ago my parents took the bus into New York with their friends Doris and Frank to see a Broadway show. My mother always has to go to the bathroom and knows where they are in each and every supermarket, mall, bookstore, and department store on the east coast, so she thought she would go to the bathroom before leaving Port of Authority. Her friend Doris came with her and looked somewhat uncomfortable. My mother asked her what was wrong and she said that she didn't have any change. This was in the day when public bathroom stalls would be locked with big silver change machines and if you did not have a dime you were not going to get in. My mother, however, knew that they were doing away with this practice and that most of the coin machines had been disabled. To reassure her friend she said, "Don't worry Doris, you don't need change anymore." And with that she demonstrated by opening one of the stall doors and then closing it, opening it and then closing it, saying, "see?" .....until she heard the small voice of a little old lady sitting on the toilet bowl saying,"Could you please stop doing that." My mother stopped in her tracks, opened the door looking directly at this poor old woman. After apologizing profusely, she and Doris had to run out of the bathroom and look for another one...

Why am I telling you these stories? I don't know. Because they make me laugh? Maybe. But I think that they are the stories of survivors. I am waiting ...waiting...waiting...for who knows what. But while I am waiting and worrying, and picking out the music for my funeral service (just kidding...that's been done already) I am also remembering, and sharing stories and laughing. They make the waiting go by much quicker and I think that this is the best part of life anyway. I really believe that humor, in any form, and a positive healing attitude and environment can do wonders.

One last story. (for now) When I was 10 years old my mother was first diagnosed with breast cancer and had her first mastectomy. She had radical surgery that was different from what we know today so it took longer to build up her arm muscle to lift her arm over her head, etc. I remember her standing next to a wall and using her fingers to creep up as high as she could go to strengthen her arm. One day, not too long after my mother came home from the hospital, my father put us all in the Rambler (a car for those of you too young to remember) and we headed off to Sears. My mother asked my father where we were going and he told her that we were going to Sears to buy a dryer so it wouldn't be so difficult for her to have to hang all the clothes on the line. My mother burst into tears and none of us knew what to make of it. Through sobs she said, "I must be dying, you would never spend that kind of money." So, my father promptly pulled the car over to the side of the road and was going to turn around and go home. My mother said, "You'll really go home?" He said, "Absolutely, I don't want to upset you or have you think you're dying or anything...I just wanted to make things a little easier for you." To which my mother replied, "Then let's go to Sears before all the good sales are over!"

Who knows what is ahead for me but you can be sure that I am not going to stop telling the stories and I will never turn down the offer of a large appliance....even if I am dying....

Thanks for helping me get through this afternoon's wait. The visit was very enjoyable. Talk to you soon.

So....

Hi, I'm home from the hospital. I had 5-6 hours of surgery on Tuesday August 11th and I was home by dinner on Thursday August 13th. My doctors thought I was doing great and that pain management was the main objective (next to watching for infection) and they said that I didn't need to be around sick people anymore so they let me go. I have to say that the pain has been difficult. It can be managed with dilaudid and valium until I try to skip a dose. Just in the past few days I've been able to stretch out the timing on my pain meds. I guess it will just take time. I can't compare to last time because they were two very different surgeries.

Colleen, Susan, MaryLou, and Colleen's mother, Carolann, all coordinated schedules so that they could take care of me (there are certain things that I cannot do alone) and make sure that I was not alone for the first couple weeks. That was no small task considering that people have to work, Rebecca was moving into college and Susan was getting ready for a trip out west to see her brother George, etc. Olivia was also a big help, and the visits from Kara, Ashley and Casey, complete with Wawa chocolate milkshakes and Rita's Swedish Fish water ice, certainly kept me laughing (Thank you for that additional pain...)

I know I heal well, I'm just not feeling well at this point. I have seen Dr. Gottlieb weekly and apparently that is the way it is going to be for awhile. He is happy with the surgery and the way I am healing. Colleen took out my three pain pumps by the end of the first week, and Dr. Gottlieb took out all four drains shortly after. There was a little fluid buildup on my back and Dr. Gottlieb aspirated that in his office. I am taking lots (to me) of meds and vitamins, and I was given an antibiotic for a week before we will attempt the first expansion....yippee....

I was able to see Becca's dorm, watch Phineas and Ferb with Olivia (by the way, for those of you who are familiar with this cartoon, the one with the triangle head looks like he is trying to get out of my back...), and keep myself occupied with Facebook. Reading isn't an option right now because I can't concentrate yet.

That's the good news. And then we got the the results of the pathology report. It was positive for cancer. That was a surprise. Dr. Simmons called to tell me the news and said that she waited 2 hours to call me because she not only spoke to the pathologist, my oncologist Dr. Kennedy, and Dr. Gottlieb, but she also had to take some time to compose herself because this was just not what any of us were expecting. It meant alot to me to know that it was difficult for her too. I have the best team.

I don't really know what this means in terms of treatment, prognosis, or recurrence statistics but I am very grateful that I chose to go with the other mastectomy "as a precaution". This is a scary time. I thought I was turning the corner...you know, mastectomy, reconstruction, Tamoxifen, Femara, maybe back to work, apppointments and scans every three months or so...and then this. Another reminder that I have no control over the cancer or any of this. I would be lying if I said that I haven't thought of the worst case scenarios, but I also know that my doctors will do their very best to help me heal. Dr. Kennedy called the other day and told me that when they have all the information they need, we will have a team meeting to discuss options. I will let you know when we do.

Until then, keep praying and I will continue to pray for you.

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

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....

"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!

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....

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!

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.....

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?

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

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...

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???

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.