Thursday, November 29, 2007

Are There Roller Coasters at the Circus?

My dear, dear friends and family. How could I possibly be so lucky to be surrounded by such wonderful people? Your messages of support, your tears through the ether, your phone calls have all been so appreciated. I have cried while reading your memories of Mom and your words of encouragement for me and the 'Support Team.' You are all the 'medicine' I need to cure my broken heart. I may need to take it for a while, but it will help to mend it back together in time.

I am taking care of myself. But this morning Gary and I had to drive to Baltimore to complete the arrangements for Mom's remains. Laying awake last night in the wee hours, my arm brushed my abdominal incision. It was very tender. I knew without even getting out of bed exactly what it meant. I have developed an infection along my incision. This was confirmed when I looked at it when I got up this morning. Red, swollen, tender. On the way to Baltimore I called my doctor. He was able to squeeze me in after Gary and I left the funeral home, God bless him! He gave me an antibiotic which he thinks will take care of things, but he gave me his number to call him this weekend to check in and let him know how I'm doing (he is truly wonderful!) I'm having quite a bit more pain and the infection was probably the source of the pain I've been having since Thanksgiving Day.

I should have named the blog 'Stephanie's Carnival' since there aren't any roller coasters at the circus. This has definitely been a roller coaster ride. But I plan on staying in and focusing on healing myself over the next days and weeks. My wounds; my heart.

Wednesday, November 28, 2007

Circus Lights are Dimmed

Shortly before noon today, my dear beautiful mother, Carolyn Clem Braden, peacefully slipped from this world. She was surrounded by her loved ones and I am so honored to have been by her side holding her hand as she left me.

The last two weeks have been the most difficult I hope to ever have in my life. That was when we started nearing the end of our medical options. But she continued to fight. We gave her every chance to rally, but when I saw the chest x-ray from 10 days ago, I knew that she would not win this war. The doctors approached me last week about discontinuing her ventilator support, as this was the only thing keeping her alive. I could not bear the idea, feeling as though I was playing God with her life; deciding whether she was to live or die. After the awful job of sorting through my own feelings and recollecting the conversations I'd had with her about this very scenario, I knew what we needed to do. I was keeping her alive for my own selfish reasons. I didn't want the pain of making the decision. I wanted her to go at a time that she determined and take that burdensome decision away from me. I also had her last response ringing in my heart: she had told me she'd wanted to fight. I was so utterly conflicted by all of these things. But I remembered a conversation we had shortly after her diagnosis. We'd discussed quality of life vs. quantity. These last two weeks she'd been minimally responsive at best and without any quality whatsoever. The vent was the only thing keeping her alive. This is no way for anyone to live.

Earlier this week Gary started to inquire (again) about bringing her home to die. He called respiratory companies, case managers, doctors, any- and everyone to see if this was feasible. But it would be more trauma for her just to get her here and she would die immediately after arriving because her oxygen needs were much greater than anyone could provide. Again, I wanted her here for selfish reasons. I wanted her to be closer to me so I could be with her more.

After much introspection and a conversation with my father, I came to the conclusion that maybe my promise to fight for mom meant more than just fighting to keep her alive. Maybe it meant fighting for her; her wishes; what she would have wanted if she'd had a voice. I know that she would have hated to be languishing away in a hospital bed. She'd fought so hard against this thing, this wretched cancer and in the end it was her lungs that just weren't strong enough. She could never fathom how strong she really was. Such strength in such a little package.

My heart is totally broken, but I'm comforted in knowing that there is no more suffering for her. Gary, Sandra, Aunt Nell and myself were there. We spent time talking to her, praying, and reading sacred words to her. We had beautiful music playing. Music was such a large part of her life. For those of you who weren't lucky enough to know her, she was a accomplished musician. She started playing piano when she was 5 years old and played everything by ear. She also had an incredible singing voice, although I never got to hear her sing in her prime. She often joked that when she had me, she screamed so loud that she could never sing soprano again. But she did still sing.

We will start working on arrangements for her. She expressed her wish to be cremated. We will likely plan some sort of memorial service after the holiday's in Atlanta, her home town. We will reflect on her life and it will have the air of how she lived her life... Easy with a smile and a laugh.

Saturday, November 24, 2007

Status Quo at the Circus

Not much of anything new to report from the circus, but I know how y'all get when you don't hear anything. I would be the same way!

I called late Thanksgiving Day to check on Mom. They told me that they were moving her to the Special Care Unit. It is a unit that can care for patients on ventilators, but they don't do a lot of changes in the vent settings. Since Mom's vent is maxed out, and they are just keeping her comfortable for the most part, she is okay to be on this unit. She has a very large room and it's on a nice quiet hall.

Deb and Pete left Friday morning. It was hard to see them go, but Deb had been away from her daughter (my adorable godchild, Caroline) for 12 days!! Deb helped out so much during her week here with us. Pete had come up Tuesday which was a great distraction for Gary. Individually, they are spectacular in the kitchen. But together, they are a force to be reckoned with. They whipped up a phenomenal Thanksgiving feast. I also think it was good for Gary to have an extra male in the house. Being surrounded for so long by all these females (both human and K-9) he says that the smell of testosterone, which smells like diesel fuel, has been ever so faint.

After Pete and Deb left, Sandra and I went to visit with Mom. I told her all about Thanksgiving and how it just wasn't the same without her smiling face there at the table with us. Though she never opened her eyes, she seemed to smile and raise her eyebrows as I told her what Gary and Pete had fixed for dinner. I updated her on all of the emails and calls we'd received. She continued to react with her facial expressions. It was the most expressive I'd seen her in over a week. I told her that we'd connected with some old friends in her address book and passed on messages they wanted us to tell her. I remembered to call her childhood friend Judy who had wanted to just say a few words to her. I held the phone up to Mom's ear and when she heard Judy's voice, she was visibly startled! After the jolt, she raised her eyebrows and smiled! It was wonderful to see her reactions as Judy spoke to her. I spoke to Judy shortly before the nurse came in. They had to change Mom's ventilator out for a different model, so we moved our chairs back out of the way. We ended up staying about two and a half hours; much longer than I should have, but it was just so good to see her being responsive.

This morning I woke up exhausted. Visits with Mom just take it out of me, both emotionally and physically. I couldn't muster the energy to go for a visit today which just kills me. I called several times to check on Mom; no changes; status quo.

Aunt Nell returned today also. It is so good to have her back. I'm hoping I'll feel good enough to go tomorrow for a visit. If not, I know Aunt Nell will want to go. It is so much more comforting to have family there with her. I wish it were me.

Thursday, November 22, 2007

Much to be Thankful For

Such a cliche, I know, but it's something I've been thinking a lot about lately. This season has been a difficult one with the absence of my mother's beautiful smile at the house. Nonetheless, I'm so incredibly grateful for so many things. I'm so thankful for the last 18 months that she has lived with Gary and me. Since her diagnosis, we've been able to have a lifetime of meaningful conversations. I'm so thankful we didn't put any of those conversations off for a later time. We've been able to relive a lot of great memories too; many I'd forgotten. I'm incredibly thankful for the support I've had not only during my disease and recovery process, but also the whole ordeal with my mother. Both experiences have enabled me to befriend people I would have otherwise never met. In fact, many of them I have YET to meet in person. But they have given me amazing and unending support and advice.

Today I am surrounded by loved ones, both near and far. Sandra and I went to visit Mom today. She is unchanged and didn't rouse while we were there. She is, as far as we can tell, comfortable. It's all I can ask for right now.

As you gather today with your loved ones, think about what to be thankful for. If dinner ends up being late, don't get impatient. Eat some bread and remember fun times. This may become a great memory for the future; the time the turkey didn't get finished until 9pm.

Tuesday, November 20, 2007

Today's News

After the marathon visit of 8 or so hours on Sunday, I was utterly drained. I mustered the strength to make it to the couch, but that was about it. I slept on and off, but seemed to feel just as tired. While I am continuing to heal and make gains in my recuperation, I just don't have the stamina yet to put in a full day.

Monday morning I had a call from Lizzy Lou (one of the Loser Diva's) of the Left Coast. As luck would have it she and her lovely daughter were heading to Buffalo within hours to spend Thanksgiving with her brother and his family, and she had a layover in Baltimore. Making an impromptu decision, she chose to miss her second flight so she could come shower Mom with love, kisses, and a serenade or two. I gave her directions to the hospital. They jumped in a rental and high-tailed it to Annapolis. They sang several songs including 'Santa Baby' and the 'Green Acres' theme song. I know Mom was loving it and laughing along inside! She and Lovely Daughter then headed to North Beach to shower us with love and kisses for the evening. It was wonderful and we had a sleep-over last night with them in the loft above our bedroom. They continued on the second leg of their journey today.

We had a short visit with Mom today. We jumped through a few hoops to get permission for Ripley to visit 'Granddogma' but it was very worth it. They had turned down Mom's morphine drip in hopes to decrease the sedation so she could enjoy the visit, but she is so sensitive to the drugs that it gave her only minimal change. She nonetheless is still comfortable. She was fully aware of her fuzzy visitor though. She smiled when we came into her room and told her that Ripley was in tow. Ripley also arched her head and stared at Granddogma when we came in also. We put her on the bed and she sniffed and sniffed. She inched forward to Mom's face and gave her sweet little kisses. Mom squeezed my hand. After a few minutes of sniffing and licking, Ripley became very upset and wanted Gary to hold her. She kept darting her eyes toward Mom and burying her head under Gary's neck. After a while, she wanted to get back on the bed and she laid by Mom's side.

Ripley was very quiet on the ride home. Normally angling for the front seat, she climbed in the back with Sandra and curled up. I know how she feels. Even though this visit was just an hour I'm beat. These visits are emotionally exhausting, but being at home just waiting isn't much better. The Support Team are just as busy as bee's around me. Sandra and Deb are Gary's right and left hand girls right now. They clean, fluff, launder, cook, and do any other necessary household or outside errands for us. It is so good to have them here now.

Monday, November 19, 2007

'Thanks' Doesn't Cut It

My dear, dear family (I say 'family' because you are all, friends and family alike, my family now.) I read every email through tears of gratitude for the support and advice you are passing along. Every single message helps me sort through all the jumble of feelings. Thank you, thank you, thank you... The words just don't seem adequate enough.

Sunday, November 18, 2007

Dark Days at the Circus

Friday and Saturday mom was in and out of consciousness. She attempted to write some notes, but we had a very difficult time figuring out what she was writing. It was so frustrating for us and her. After about 30 minutes we were able to figure out what she wanted. She was having a very difficult time breathing and was anxious. They were giving her low dose morphine and ativan which made her very drowsy.

This morning sometime after 5am, mom's nurse called to say she wasn't doing well. She'd had a rough night and had asked for ativan. The nurse repositioned her and her oxygen saturation in her blood dropped to the low- to mid-eighties. (It should be mid- to high-nineties.) Nothing the nurse and doctor did would bring her numbers back up. The vent settings were set the highest they could go. The nurse called us and told us to come.

The dogs roused Deb (my best friend from Atlanta) and Sandra. I called Gary who was at work. I told him to come to the hospital after his shift ended at 7am. The girls and I were out of the house in 15 minutes.

It's pretty bad. She roused a little when we arrived, but her eye's were just so foggy. She was trying to tell us something; or maybe she was just really confused. That's possible too since her oxygen saturation was so low. She appeared to be very uncomfortable so I asked them to give morphine whenever she appeared to be struggling.

The doctor came around about noon. He said at this point they had done absolutely everything that they could for her. Gary and I had discussed her status about an hour before. We decided to make her a 'no code.' There really is no sense in keeping her a full code. They can't possibly increase the vent, she would never survive compressions, and the only thing they could do is to give her medications to keep her heart going and her blood pressure high enough. We told the doctor we wanted to keep her as comfortable as possible. We put her on a morphine drip which will keep her sedated, but she will not have any pain.

It was a rough day for us all. We stayed until around 2pm at which point I was really worried about Gary who'd had yet to sleep. I was very weary myself. We chose to go home and made the nurse promise to call us if there were any changes. We got home around 3:30. I went to bed around 4 and slept for a few hours.

I think this is the hardest thing I've ever been through. I want desperately to stay 24/7 with her; to spend every moment I can with her. But I just don't have the stamina since my surgery. I can usually get about 3 hours of activity before I need a nap, but today I went about 10 and I'm completely spent now. It's breaking my heart completely. I have so much support around me; Gary, Sandolly, Deb, all the calls and emails from you all, but my mommy is dying and I can hardly stand to take each breath without hurting more and more.

I will do my best to keep the blog updated. I know you are all wanting information as it comes and know this is as hard for many of you.

Thursday, November 15, 2007

Show's on Hold at the Big Top

Sandra had just finished helping me with my shower. I was exhausted and was looking forward to settling down for a nap. I'd barely sat down on the couch when the phone rang. It was the hospital. The doctor was calling to tell me mom wasn't doing well. She was doing okay until shortly after 1 o'clock. They were planning on taking her to the OR at 1:30 to put in the Pleur-X catheter. For some reason, the oxygen levels in her blood started to drop and wouldn't rebound. They were having to use a lot of forced pressure to get the air into her lungs. They did the procedure at the bedside instead because they didn't think she was strong enough to travel to the OR. They had some difficulty getting the catheter in, but they said that the fluid 'spewed' out of her with such great force, they couldn't believe it. We arrived shortly after they finished and they were getting the chest X-ray. She looked really bad, but I'd learned from her nurse they'd given her a lot of morphine and ativan which just completely knocks her for a loop.

She opened her eyes for a quick moment and squeezed my hand before nodding off again. The doctor had stepped down to the ER before we'd arrived, but came back to her room after a while. He was very concerned about the amount of pressure needed to ventilate her lungs. It was still very high, but had come down from the high number it had been earlier. He essentially told us that this was probably it; they had done all they could to help her. He added that taking her home was not an option because home vent's can't deliver the amount of force that she needs now to get the air into her lungs. He wanted me to make a decision right then and there to put her on hospice. I asked him if he had told all of this to mom. He said she had been too sedated. I told him I wanted to talk to her before deciding anything.

I went into the room and held her hand. I asked her to open her eyes and listen. She did. I explained what had happened and what they were telling us. I told her she was very sick. And they I repeated to her what I told her weeks ago: I would do what she wanted. If she was too tired and wanted to go, I would let her go. If she wanted to fight, I would tear down the walls and defy anyone to hold me back in fighting for her. I then asked, "do you want to still fight?" With less hesitation in answering any question I've asked her in the last week, she nodded 'yes.'

I walked out of her room and found the doctor. I told him what I'd done and her answer. I explained that I've been with her throughout this and based on what I've seen, her body doesn't handle insult very well initially, but that in a day or two, she tends to bounce back. She pulls from reserves that no one had any idea that she has. She wants to fight and I must follow my gut, despite the doctor urging me to let her go. If things don't change in a day or two, we'll revisit things. But for now, fight mommy. Fight!

Unorthodox Question for Readers

I found out yesterday from Dr. Rodriguez that mine is a fairly rare surgery as there are only about 6 hospitals around the country that are doing the DIEP Flap. (I am so incredibly lucky to have been where I am!!) A recently reformed modest person, I have had no reservation about opening my shirt to show what I had done. It is all in the interest of educating people; medically speaking of course. There have been many of you how have expressed curiosity about what my new 'landscape' looks like. So I am offering so show those who are truly interested via a photograph. I am now so passionate about what I had done. The work Dr. Rodriguez did was absolutely a miracle. I have looked at so many pictures of reconstruction online and they just don't compare to my results. I've said it before, but if I can possibly help one single woman out there to get through and past this disease, I will feel as my time on earth has meant something. I understand that for many woman, feeling 'whole' again can be such a challenging part of breast cancer surgery. If in showing my results to you can either help you or someone you know (or even don't know), that will be worth any possible embarrassment I may experience. And believe me, I am not AT ALL embarrassed by the work my surgeon has done!

So if you are interested, please email me at I realize that there are those who have no interest for many reasons. No worries. That is why I will just email those who are and refrain from putting any such photos on the blog.

Wednesday, November 14, 2007

More Milestones

Today was my follow-up appointment at The Breast Center. I was supposed to be meeting with the Breast Surgeon, the Medical Oncologist and the Plastic Surgeon. Since my pathology report came back with flying colors, I didn't need to meet with the Medical Oncologist. I met with Dr. Khakpour (breast surgeon) and she was very pleased with how everything went and basically said that she was signing off on my care. I won't need mammograms in the future (since I have stomach where my breasts are supposed to be.) Essentially, I will only need to do self-breast exams to check for any necrosis of the flap, which is not likely. I have offered my services to her; well, to her patients who may be considering mastectomy with the DIEP flap (what I had done.) I will be glad to talk to them about my experience and show them my "battle scars." If I can help any woman going through this, it will have been worth it.

After meeting with Dr. Khakpour, I met with Dr. Rodriquez and his nurse practitioner Nicole. Even he was impressed with how well things look. Since the plastics team still has some work to do, he will continue to follow me. I will see him again in another month for follow-up. In about 3 months, "after things settle" I will meet with him again so we can start to contour the breasts if needed and start working on reconstructing the nipples. I think things look pretty good, but he pointed out that the right breast is slightly larger. He will be able to even things out and ensure that the contours are even as well. I am very pleased with his high standards of equality, even though, as I said, I am so amazed at the work already. Gary and I were sitting at lunch and I pulled out my top and looked down it and said, "Wow!" Gary cracked up. I just can't stop looking at them!!

After talking with Dr. Rodriquez, Nicole removed ALL (four) of my remaining drains. I HATED those things and was thrilled to get rid of them. I've been told that it can hurt having them removed, but pain was not what I felt. I have absolutely no reference to describe what it felt like. My breast and parts of my abdomen are numb, but as she removed them it felt like having a string being pulled from under my skin; not quite a tickle, just very, very strange! Then she removed the stitches. As she removed each stitch, she laid them on a gauze pad sitting on my chest. They looked like recently deceased mosquitoes; 20 in all when she was done. My breasts now look like someone carved the outline of little footballs on each one. There is minor scabbing which should wash away in a few days. The incision on my lower abdomen is thin and long from back of the left hip bone to the back of my right hip bone (they gutted me like a fish!) This is a little more red and scabbed than the breast "islands" as they call them. It will take a little longer to heal. I'm still walking hunched over, but Dr. Rodriguez said that I can start to walk more up-right as I can tolerate. It still feels like I'm stretched tight like a drum. I still have lifting restrictions; no more than 8 pounds; 5 or less is preferred.

It feels so great to have this part behind me (did I mention how happy I am to have to drains out?) But a lot more than my appointment was going on today. Aunt Nell went back home today. Her son Steve and Aunt Doris (her sister) came yesterday to fetch her to take her back home. I cried like a little girl when saying good-bye. I can't ever express my appreciation for her time, her help, her compassion and caring. On the way home from my appointment, we picked up Sandra, mom's best friend. She will be here to help with the next phase of things. We ran by to see mom very quickly. She was very drowsy. I didn't know it at the time, but she'd had physical therapy earlier and was very tired from the activity. I'm so thrilled that she is finally receiving therapy to strengthen her! Tomorrow they will be placing the Pleur-X catheter into her pleural space. Her lung is still filling with fluid; not entirely a surprise. This catheter will allow Gary and I to drain this fluid at home which will keep her MUCH more comfortable. We will also start getting training on the home vent. With all of this going on, I'm hoping we can have her home before Thanksgiving! So it was a packed day. I'm totally pooped, but did I tell ya how happy I am to have the drains removed?

Monday, November 12, 2007

Newsflash at the Big Top

The big news of the day is that I have officially been designated as cancer-free! Not a huge surprise, but it feels really good. The reason I chose mastectomy was to make sure they got all the cancer. My doctor called me today to let me know that the cancer was, in fact, ductal carcinoma in situ, there was no microinvasion of cells and the sentinal node biopsy showed no involvement. Based on everything, I will not need radiation (which we suspected) AND I will not need tamoxifen, which is a surprise seeing as the majority of women with breast cancer take it for 2 to 5 years! Yippeee!!! Now I just have to focus on walking like a homo sapien again and things will be good.

Gary and I went to see mom today. She still looks great and they had just completed an evaluation of her swallowing when we had arrived. She had passed the swallow study and will start tonight on soft foods. Gary asked if she had any requests from his kitchen. Garlic mash potatoes and ground meat. I'm sure it will be fantastic when it's all said a done. We spoke to the case manager and she is working in earnest to get everything ready for mom to come home. We will need a lot of equipment to take care of her here. They will need to order a home ventilator and will need to train us on its operation (a home vent is VERY different from the ones used in the hospital.) Should be a piece of cake though. They've not been aggressively weaning mom, but once we get her home we can work on it. Since I used to work at a hospital that specialized at weaning vent patients, I'm well aware of the practices they used, so I think we can be successful. Also we'll be able to get her back on the Enercel, the homeopathic immune booster. This should really jump-start things! We are just so anxious to have her back with us... We can't wait!

As mentioned in previous blogs, I have traded in vanity for comfort. This is in regards to using the walker. I knew the chiding would come; sooner or later. Seems like it's sooner... At the hospital, we ran into one of mom's doctors. He asked how I was doing, then asked as he pointed to the walker, "where's your little basket?" Ha ha. I told him the pink one with the pink glitter tassels, the bike horn, and the antenna with the reflector flag were all on order. My darling husband added that he was going to put the tennis balls on the back legs when we got home. ...Hilarious! The good news is I am 10+ years younger than Gary, so he'll get his. I'll have my revenge... sooner... or later...

Sunday, November 11, 2007

Happy Days...

I was feeling fairly energetic yesterday, so I decided I wanted to go see mom for a short visit. My walker had been delivered Friday evening and putting all vanity aside, I still didn't think it would make much of a difference in helping me to walk 'hunched over.' Vanity be damned 'cause I'm here to tell you that it gave my lower back such relief that I could have walked for miles with that thing! So in the car Aunt Nell piled me; walker in tow. It felt good to stretch my legs, back and all of the other muscles as well. When we got up to moms room I could hardly believe my eyes! The breathing tube had been removed from her mouth and she had the biggest smile I've seen on her in 10 months!! It was such a beautiful thing to see, I was beside myself with joy!! She was mouthing words a mile a minute. Aunt Nell has a deaf son and does a lot of lip reading, but mom was going so fast that even Aunt Nell couldn't keep up with her. She is definitely returning to her old self, talking a hundred miles a minute, smiling, laughing... Such a wonderful sight to see. She even demanded a nail file, her make-up bag and a mirror, and a box of Bic pens. The doctor said she is definitely on the mend because she is now more concerned with her appearance! I think we have crossed a hurtle and now can start working to get her home. Yea!!!

On the way home, Nell and I continued mom's tradition and stopped a Chik-fil-A for a bite. Every little thing like that I do just makes me feel a little more normal. By the time we got home I was definitely tuckered out. I crawled into bed and had a nice nap. Nell and I had a nice evening (Gary had to work.) But despite having a 'big' day, I didn't sleep very well. I think that while getting out felt good and I thought I was handling it well, it may have been a little too much for me. I'm going to have to learn the exact balance of knowing how much to push and knowing when to stop. I'm amazed at how much energy I'll have, but even a little activity will just kick my butt!! I was quite drowsy this morning and stayed in bed until around 10. Aunt Nell helped me with a shower and I'm going to relax the rest of the day. She has collected all of the things on mom's 'laundry list' and has left for a visit.

I have a couple of days to prepare myself for my next big outing. I have my follow-up appointments with the team on Wednesday. It is going to be a long day in Baltimore. We'll also be picking up Sandra from the airport. She will be returning to assume the role as caregiver from Aunt Nell while she goes home to take care of some business for a few weeks. I have no idea what we would have done with out Aunt Nell. She has been such wonderful support both emotionally and physically! She is such a powerhouse, I can only pray that I will have a fraction of her strength when I'm 80!

Friday, November 9, 2007

The Act Continues

Today I've been tired. Probably because I had a rough night. I won't go into the details, but I'll just chalk it up to the Dulcolax Double-whammy. Yeowza!! The experience left me a bit pooped today (pun intended...) But I was able to have a nice shower and get my hair washed today and then cuddle up in my wonderfully cozy robe that my co-workers gave to me and napped throughout the day. I'm feeling much better tonight.

Mom on the other-hand is doing wonderfully!! I had planned to go spend some time today with her, but in light of my evening, I chose to stay home and rest. She was scheduled today to get a trach and I wanted to be there for a little while to give her support. Gary went in my place and spent about 2 hours and then Aunt Nell went up this afternoon. They both said that she was just as perky as they'd seen her in weeks! Very alert and writing many notes. They did the trach at the bedside around 2 o'clock and let Aunt Nell back in around 4pm. She was still very perky and looked SO much better without the tube in her mouth. I'm hoping to see a rapid progress in the next few days. More to come.

I had a wonderful experience last night. I spoke to a woman, a complete stranger, about to undergo the same surgery as me (but she's having a single-sided mastectomy with reconstruction.) Our experiences have been very similar in many ways. She is a friend of a co-worker of mine and when they learned about our experiences they put us in touch. At my invitation she called me last night on the eve of her own surgery. I was able to fill her in on my hospitalization and answer her questions and fears.

Continuing on my own story; on Sunday night I was finally transferred to a step-down unit. The staff there was incredible. I was getting up much more, sitting in the chair. I had thought far enough ahead to bring DVDs to watch. They made the time pass much faster. At our hospital, you actually have to pay for TV access. You have to purchase a prepaid card or something to that effect to get about 20 channels. Now, usually I can take or leave most of what's on TV, but when I worked on the neuro / neuro-surgical floor, I would turn on the news for my patients. I believed it helped with their orientation to the here and now. And as much as I don't like much of what is broadcast, it does help to pass the time. Until I pulled out my DVDs, time passed excruciatingly slowly!!

It was so wonderful to have visitors too! They so helped to pass the time and it was so nice to discuss something other than pain scale or bowel movements. I received several floral arrangements, the wonderfully cushie robe I mentioned earlier, an incredible basket of goodies, and a "puppy" that stayed with me constantly. Two co-workers gave me a little stuffed puppy that was soft and looks remarkably like Ripley. Very cute and gave me comfort when I missed the 'girls' (the pups at home!) Now I'm here at home. I'm navigating the stairs very well; they are much easier than I thought they would be. My walker was delivered today and, oh, what a difference that makes. I was getting around fine without it, but I have much less lower back pain when I use the walker since I have to walk hunched over for now. I've settled into a routine. I wake up and have coffee in bed, listen to NPR and watch the Bay come alive. Then I come downstairs, have breakfast, read email, do my assigned exercises, and then maybe nap on the couch. (Now that my walker is here, I'll probably add a couple of laps on the porch...) After lunch I go back upstairs for another nap and then come back down to do more exercises and have dinner with the family. Then maybe a movie or some TV and back up to bed for the evening. If I'm able I will try to go visit mom once or twice a week. We still have no idea when she will be able to come home. Day-by-day...

Thanks to all of you for your calls and emails. I have continued to read them and enjoy every single one!! Your love and support is palpable and helps to heal me!

Thursday, November 8, 2007

Circus Star Emerges Through the Ring o' Fire

I write this morning from my bed looking out over the Chesapeake. I watched the sunrise this morning and feel completely relaxed. First, I'd like to publicly thank my extraordinary husband, who has done a remarkable job of keeping all informed of the happenings. Quite frankly, I'm a little worried that he has set the bar a bit higher for my blog entries! This morning I read every single email he sent out and every single reply returned. I've experienced pride at his remarkable strength, overwhelming gratitude for the prayers and best wishes, outright belly laughter at some of the responses (Eric L, you are killin' me!), and tears of joy at the amount of love that has emanated from this little screen this morning.

Rewind 7 days... I was understandable nervous heading to the hospital Friday morning, but I had difficulty putting my finger on what exactly I was afraid of. I had every confidence in the team, I felt that they would be able to manage my pain, I was still confident in the decision I'd made for the double mastectomy... Fear of the unknown; that must have been it. After going back to change into the hospital gown, they let Gary come back. Shortly after, the anesthesia team came in. Gary, in his usual modus operandi, had everyone laughing in no time. Dr. Rodriguez then came in to draw cartoons on my torso. A big smiley face on my belly, with a circle around my belly button for the nose and two circles around my nipples for the eyes. It was pretty funny looking. Only then, were they able to give me some valium to take the edge off. Gary was still in "improv" mode and I remember laughing all the way to the OR. I don't remember what about exactly, but Glenda the OR nurse and the anesthesiologist and I cracked up all the way there. Something about I should have taken the red pill... ("Matrix" fans will get this.) I remember then looking up to see the two large OR lamps and thinking what a cliche. You see that in every movie about someone going to surgery, but that's exactly the last thing you see before you climb down into that hole of dreamless sleep. I think that they may have been the thing I was most afraid of. There is something very unnerving about having your brain on hibernate for 14 hours. There is no sense of time passage, no memory of anything.

The worst part of coming out up out of the hole was the nausea from the morphine (I'd rather have been in pain.) Oh, and the sore throat from the breathing tube. My night nurse Jane was a total angel. I've not had to be bathed by anyone since I was a baby, but she gave me the most gentle, soothing bed-bath... Nurses, I know that we think that baths may be the least important things we can do, but from the patient perspective; not so. It is such a tender, caring and necessary act. It was incredibly relaxing and is one of the greatest acts of kindness you can do for the infirm. All I could do was to keep thanking her over and over again.

There wasn't much sleep that night as they had to check the pulses on my breasts every hour to make sure everything continued to work. Much napping in between... I started eating the next day and also began getting pain medicine orally. I have to say, that the pain was not what I expected. What I mean was that it wasn't as bad as I thought it would be. After being able to assess the landscape a little better, I realized that the insertion sights for the drainage tubes (all SIX of them) were (are) what was most uncomfortable. I was still pretty numb across my torso from my breasts down to my bikini line. I likely won't regain any fine sensation since nerves were cut. I felt like some pre-pubescent boy not able to take my eyes off the work they'd done. The breast mounds they created are amazing. It really doesn't look like they removed anything. I keep thinking 'I got got a new rack; same year and miles as the last pair, but slightly improved model.' It is incredible. In my mind, Dr. Rodriguez walks on water!!!

The only other PACU experience was my emotional meltdown. It was Saturday night around shift change. My back was sore and I wanted to bring the head of the bed up a little. My arms were up on pillows and the controls for the bed were on the railings. I couldn't reach them because of the pillows and my limited ability to move. I tried and tried, but no luck. I called to my nurse, but she didn't hear. I called again. After 5 minutes I started calling for anyone. My back was in full spasm at this point; I was in pain, no one was coming. I basically came unglued. All the stress of the last few weeks just came in a huge tsunami of emotions. Finally an nurse came up and and helped me raise the bed. My nurse and the new nurse coming on duty came to help. It was so overwhelming not having any control over the simplest of things like shifting to get comfortable. I let it all out and unloaded the whole saga of my life in recent weeks onto my night nurse Rokia. She too was an angel sent to me for that evening. Her compassion knows no bounds and she was exactly what I needed. So Mr. Rivest if you are listening, you need to outfit EVERY bed in the hospital with hand-held call bells with bed controls! (FYI: Rivest is the big cheese at the hospital.) There are many more people with procedures much worse than mine that need to have some semblance of control during their hospital experience.

Nearly 45 hours after my surgery was completed I finally was transfered to a bed. It was so good to be in a room with a clock and a window. You have no idea how quickly you can lose all sense of time without one of those two things. More later on that experience. As Gary would say, 'film at 11.'