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.