Thursday, December 27, 2007

Just Chillin' Out at the Corn Dog Stand

I suppose y'all thought I fell into some sort of hole in the earth. Not so. Just was taking a break from it all. I've been working hard on rebuilding my stamina which seems to be the only residual from my surgery. On days when the weather isn't so depressing, I've been walking along the boardwalk. I walk down to the post office everyday to get the mail. And today I got out to do errands. Everyday I get home, I just collapse though. I'm definitely improving, but it's in very small increments. I start back to work on Wednesday, so we'll see how it goes...

I had another follow up appointment with my doctor today. We discussed the next phase of 'rebuilding' me. There are four things he's planning on doing; two of which are "clipping my dog ears and making my cats eyes smaller." And I swear to you that is exactly what he said!! But I'll break it all down in 'human' language.

  • As mentioned before, he will re-do my abdominal incision to give it a nice small scar. There were areas that opened up during my infection so now my scar is rather wide in a few places.
  • At either end of my abdominal incision (which ends right around the love-handle areas) the skin has formed little triangles. These are what he calls the 'dog ears.' He's going to smooth these out because dog ears coming out of your love-handles is completely unacceptable in most social scenarios.
  • Gravity has taken its toll. (He told me this would happen, but he really didn't have to. I'm well aware of this horrifying phenomenon from past experience.) During my surgery, he had to remove a small part of the 4th rib on each side. The breast mounds have settled a bit and now I have what can only be described as an area that is concaved just over each breast. So he needs to insert a little more fat to make it look more natural and less like a breast implant.
  • Lastly, he will insert my new nipples and decrease the size of the skin islands, which incidentally are shaped like cats eyes.

The surgery should take around 3 hours or so and I'm scheduled for March 23rd. He said I'll be out of commission for a few days, but I should be back to work by the following Monday or Tuesday.

Hope you are all having a wonderful holiday season. Things have been very low key here. Gary had to work Christmas night, so we haven't really participated much in holiday festivities. He made a really scrumptious breakfast on Christmas morning and then we took the dogs on a nice walk. It was actually very nice just to spend time together and not be so caught up in all of the gift insanity or all of the cooking craziness he is usually involved in. Seeing as he is working on New Year's Eve, I plan on doing something completely different to ring in the new year. I'm going to celebrate behind closed eyelids. Usually we are out celebrating, but I figure I'm going to welcome the new year the next morning well rested. Philosophically, I think it's a great start to 2008.

Friday, December 14, 2007

Updates from the Circus

It's been a little while since I blogged, so I wanted to let you know that I'm doing okay. My infection has cleared, but my incision looks like hell. Dr. Rodriguez says he'll be doing the revision, but I'm not sure when. Sections had opened up to drain during the infection, so they are still healing. I'm also still trying to 'stretch out.' I'm walking upright, but my range of motion isn't quite back to normal. My right arm is doing better, so I'm trying to focus on reaching for things with my left. But being a righty, this is taking considerable mental effort.

My dad came up last Monday. He's been helping me going through Mom's stuff and walking the dogs and things that I'm not up to yet. Mostly he's been here for emotional support. My grief over Mom's passing has started to subside, but I miss her terribly. Not an hour goes by that I don't think of her. Sometimes I'll hear something and think 'I can't wait to tell Mom that.'

I'm still working on the details of the memorial and am still trying to decide on an appropriate venue. Still planning for late January though. More details as they become available.

Thursday, December 6, 2007

News from the Big Top

We had a few inches of snow here yesterday. It was beautiful and I was very happy to watch the weather from the comfort of my living room next to the fire. I think I am starting to feel better though. The little piles of clutter all around the house are starting to get to me. I straighten a little here and there, but like mushrooms, every time I clean up a pile three or four pop up in its place. I managed to help Aunt Nell change the sheets on my bed, then immediately took a two hour nap. I'm still trying to get my strength back.

I had a follow-up appointment to check on my infection today. It has started to clear and I have only a few more doses of the antibiotic to take. Dr. Rodriguez was encouraged and removed a few left-over sutures (likely the culprits of the infection.) I'll see him just after Christmas and we'll talk about my revision of my abdominal incision at that time. A few parts of the incision opened up and drained the infection, so he'll have to trim away that tissue and stitch it up again so I'll have an 'attractive scar' (if there is such a thing!)

Getting out this morning to head to Baltimore was another matter. It usually takes about an hour to get to the city, so we gave ourselves over 90 minutes because of slippery roads. Despite planning ahead it took over 2 hours. No worries though. My doctor was trapped in his driveway and arrived only moments before I did.

Aunt Nell will leave us tomorrow. She has been such a wonderful help, both as a caretaker and emotionally. We will miss her and have made her promise to come back when I have recovered and we can 'play.'

Sunday, December 2, 2007

Do Something...

You all have been so supportive, asking what I need done. You are all giving me exactly what I need right now; prayers, love, memories of Mom. I realize that you also feel the need to 'do something' as an outlet for your own feelings and grief. Donate in memory of Carolyn C. Braden... money, time, yourself; whatever you can or want.

If you've followed the blog from the start you may remember my mentioning a website I found early on called the Circus of Cancer. If you've not gone to the site I suggest you do. This was the brainchild of Kelly Corrigan, diagnosed with Stage III breast cancer before the age of 40. The site is filled with a photographic and written account of her journey through this circus. The site also focuses on how to talk to a friend with cancer. I feel this is such an important aspect of a woman's diagnosis because so many people don't really know what to say. Or think they know what to say.

People keep telling me how strong I am, but the truth is that I have derived my strength from the support you have given. I somehow have been able to surround myself with truly remarkable people, but I don't think everyone is so lucky. This education campaign that Kelly has taken on has so much more value and importance to breast cancer survivors than any of you know. If you would like to make a donation in Mom's memory, please do so by sending it to:
Kelly Corrigan's Circus of Cancer
455 Mountain Avenue
Piedmont, CA 94611

Another organization that is close to my heart is the American Cancer Society. I worked there in a breast and cervical cancer screening program several years ago. I am absolutely committed to the ACS mission. And folks, they are one of the best when it comes to utilizing funds. They use less than 10% of their funds on administrative costs and salaries. The rest of the money goes to research, programs, advocacy, and fundraising. You can donate money or time as a volunteer. Go to the American Cancer Society donation page for more information on ways to donate in Mom's memory.

Mom hid her cancer for over a year. I'm living proof that if caught early, cancer can be cured. More needs to be done so that no other woman ever needs to go through what my mother did. There must be more research for cures and treatment, more funds so that every woman can be screened early and receive treatment, and education so that woman (like my mother) don't have to be burdened with the fear of this disease.

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.'

Wednesday, October 31, 2007

Counting Down to Fire the Human Cannonball

We continue the dance with mom. She still continues to wean; very slowly. But other problems are arising. She has what's called anasarca (she's retaining A LOT of fluid.) They've started giving her some albumin which will hopefully help. The second issue is a potential infection. She's not having any fever and her white blood cell count is well within an acceptable level, but one indicator in her blood work was quite elevated (for you medical types: she had 34 bands...) They've taken samples of her blood, urine, and sputum and will check them for any 'bugs.' And they've started her on antibiotics just to be sure. She still remains in good spirits and donned her witches hat (complete with long stringy hair) as her Halloween costume today.

Her thoracic surgeon spoke to us today about her right lung. He said that he would like to try the talc procedure again. It would be not quite as big a deal, since she already has the chest tube he can just squirt the talc in through the tube. He thinks that since the lung has re-expanded that we may be able to take advantage of the improvement and that it may "take" this time. Mom's attitude is 'why not.' The tube is already there, so it's no big deal.

The count-down for my surgery is well underway. I've been working to get things done before I have to go in: paying bills, collecting all that I think I may need (knitting, reading, loading my iPod...), laundry, etc... It occurred to me that I absolutely had to make time to trim my toe nails! Sounds mundane enough, but if I don't get to it now it could be WEEKS before I can reach them! Little things like that just keep flooding my mind. I mean, I don't want to let it go or else I'd be able to climb trees with the things in a few weeks!

Tomorrow I go for a nuclear injection. Rose, Breast Cancer Coordinator extraordinaire, told me Monday that this won't be a normal injection into the vein. They will need to inject it directly into my breast so they can do a sentinel node biopsy. This checks to see if the cancer has spread to the lymph nodes. If it turns up positive, they will be able to see it during surgery and they will remove the nodes. Rose tells me that this burns when they inject it. I report for surgery at 6am on Friday. The surgery will start at 7:15 and will go for about 12 hours. After surgery, I will stay in the recovery room 24 to 48 hours. The nurses there are trained to spot early signs of clotting (which is a major risk of this surgery.) After that time, I'll be out of the woods and will be transferred to a regular hospital bed. I will have about 6 drains. I will also be "hunched" over for a while. It won't be pretty.
It will be a little while until I can get my hands over my head so I won't even be able to wear the t-shirt my friend Lizzy Lou got me that reads "Keeping Them Real!"

Tuesday, October 30, 2007

More News from the Center Ring

So much to tell... Mom's condition remains, for the most part, the same. They continued weaning yesterday (she was on CPAP most of the day- a lower level of support than she'd needed earlier in the week.) The plan today was to wean her off completely and, if she did well, remove the tube. They turned off the vent. Her respiration rate and oxygen saturation in her blood both stayed in a very acceptable range, but she indicated she felt like she was working very hard to breath. I think that since they had turned the vent down the day before, she had been working on deep breathing and she had just tuckered herself out. I may also just be wishful thinking... The doctor decided that it probably would not be best to remove the tube or take her off the vent. I stepped outside the room after he had examined her and asked about her lungs. The right side, the side they did the talc pleurodesis, is remaining free of fluid. But the only reason why it is clear of fluid is because she has a chest tube in. It is still putting out a lot of fluid and will likely continue to do so. The bad news is that the procedure to make the lung stick to the pleural space and hold it open didn't work. It is not something they can repeat, so we may need to go to Plan B. The option is to put in a small tunneled catheter into her pleural space. We can drain the fluid every few days which will give her relief and keep the fluid from building up.

The left side is another issue. They drained it late last week to give her more reserve. But despite them removing the fluid, the lung did not re-expand... at all. I looked at the chest X-ray from this morning and the lung is clearly "shriveled" up. Also the space is starting to refill with fluid. There isn't much they can do for this lung. But many people are able to function very well on just one lung.

They will continue to try to wean her, but if she is not able to do so by next Monday, mom may need to consider a tracheostomy. She has written notes to us that she still wants to fight. Her spirits are very good and she jokes and writes hilarious notes from time to time and has asked me to bring in Halloween candy for the staff. Now that she is getting the proper oxygen and nutrition, her humor has returned. She has said (written) that she wants to try the trach if need be. I am so glad she still wants to fight, but I wish I could be there over the next week because so many decisions (big ones) are going to be made. I have every confidence in Aunt Nell to help mom through this. The family has written and emailed and let me know how wonderful Nell is at caregiving (I was pretty aware already.)

So despite that I watch 'Dancing with the Stars' and still can't tell one dance from another, I'm getting pretty used to the dance we are doing here... Two steps forward; one step back... Two steps forward; one step back...

Sunday, October 28, 2007

Planning for the Next Act

Mom was a little uncomfortable today, despite the nurse giving her shots for the pain. The chest tube is very tender, plus the muscles in her ribs are sore from doing all the deep breathing. So first, the bad news. Her lungs are not responding exactly as they had hoped. Despite them draining off over a liter of fluid from her left side yesterday, her lung is not reinflating as they wanted to see. Also, there is air in the pleural space. On the right side the air in the pleural space has diminished, but she is still having a large amount of fluid draining out of the chest tube. The fluid has been blood-tinged fluid up until today; it started to run clear (that's good!) The good news, they feel as though she may successfully wean off the vent, so tomorrow they will turn off the vent through the day. If she does well, they will remove the tube late in the day.

The doctor said she would probably still be in the hospital Friday. This has caused us both considerable distress. We both want her home when I have my surgery, for many reasons that I won't bore you with. But I told her today, we are probably both going to have to let it go. It will be hard for me to relinquish control (ie. be put under during surgery) when I know that she is so dependent right now. And she hates to still be in the hospital having to focus on her own care while I'm having my surgery. It will seriously limit our communication. And the worst part is that we won't be able to see each other for a week. That will be the most excruciating part. The anticipation is exhausting.

Saturday, October 27, 2007

Today at the Circus

I know I should have posted an entry yesterday, but I was so tired when I got home last night. Mom was more awake yesterday which was encouraging. The doctor on the floor yesterday did a ventilator weaning trial in the morning. Mom lasted a little less than an hour, but then she became anxious and her respiration rate went up. They chose not to do anymore weaning yesterday. The doctor was pretty negative and told me that she would probably not wean off the vent. This kinda ticked me off, because he'd never seen mom prior to this hospitalization. The other doctors, the ones who have seen her before, all say that they believe she will come off the vent.

Her cousin Anne sent a care package with a Honey-Baked Ham, some pecan tarts, tea biscuits, pear preserves she'd made and cheese straws. Gary had called to let us know the package had arrived yesterday afternoon. I told mom what was in the package. She was pretty hungry at this point. But boy, when I mentioned cheese straws, she picked up her pad and pen and wrote, "I WANT CHEESE STRAWS!" I told her she needed to get the tube out so she could eat. She then wrote. "CHEEEEEESE STRAAAAAWWWWS!" This went on for about 15 minutes. (The only person who likes cheese straws more than me is my mother!) Needless-to-say, she is very motivated to get the tube out so she can have cheese straws.

Today Aunt Nell and I went to the hospital. Mom looked great. She's rehydrated and very alert; writing notes and joking. At 8am they turned down the rate on her vent to 8 (that means 8 breaths per minute.) She is consistently breathing over the vent, but they are concerned that she isn't taking in enough volume in air. See, her lungs have been compressed so long by the fluid that she's had very little volume, so she compensated by breathing faster. Now that they have drained some of the fluid, she can take in more air, but she has to retrain herself to do it. This morning they drained more fluid out of the left lung. They did this to give her a little extra reserve to help her wean. She did very well. After a few hours, she started to breathe much faster. I held her hand and told her to 'breathe in and out, nice and slow, nice deep breaths.' After about a minute, she was able to slow down her breathing on her own. This happened a second time and we were able to talk her down from a panic that time as well. Every hour or so, we worked on taking nice deep breaths to get those muscles around her ribs used to working again. By the end of the day, they lowered the rate on the ventilator down to 4. She continued to breath on her own over the vent very well. She just did so fabulously today! It will probably take a few days to wean her and get the tube out, mostly because she needs to work on taking a bigger volume of air, but she is very determined to get that tube out and get home.

Her nurse today was Bob. He was just fantastic! He knew just how to 'handle' her. Her cousin had included a pink cowgirl hat in the goodies she sent. Mom insisted on wearing it all day. Bob called it her 'party hat' and said she could wear it only if he was invited to the party. She teased him, but wrote a note to me that said "great nurse!" I agree.

She got a call from Sandra today (see earlier blog entry's.) She had called my cell phone to see how mom was doing and I called and gave her the number of the phone in the room. Mom had been asking about her the previous day, so I thought it would be good for mom to hear her voice. I held the phone to mom's ear while Sandra spoke. Mom was able to mouth or write words for me to say back to Sandra.

We are back again tomorrow. When we left tonight, I gave mom homework. I told her that while she's awake I wanted her to do breathing exercises for at least 5 minutes every hour... Nice deep breaths to work those muscles. You know she will. She's pretty feisty!

Thursday, October 25, 2007

A New Day

First, thanks to all for your calls and emails in response to mom's set-back. I can't thank you enough for all of your care and concern. Aunt Nell and I spent the day in the ICU with mom. When I arrived, she was very anxious, but alert. I explained what had happened and held her hand a while. She seemed to calm down. She dozed on and off today. The good news is that they were able to turn off the IV medicine that they had to give her to keep her blood pressure high enough. They also were able to turn off the sedation medicine as well. Mom was very alert this afternoon. She was able to jot down some notes to answer and ask questions. She wanted to know about all the tubes, what they were for, why she had them, how long they would stay. I spent quite a bit of time explaining everything to her and the plan for her care. It was a real moment for me. I've taken care of so many patients in the past and have explained what I was doing to them and gave a brief overview of what was going on. But I really saw a change in mom after I explained what had happened, what all the equipment was for, what to expect with buzzes, beeps and bleeps. Her humor is still intact, even in the midst of this. Her chest x-ray today looked much better than yesterday's. Her right lung is reinflating which is very good. The thoracic surgeon feels very encouraged by her progress.

They tried to wean her off the ventilator today. This morning she tolerated a little less than an hour before she became very tired and she began breathing very fast. The thoracic surgeon and mom's nurse thought this was good. The doctor in the ICU and the respiratory therapist were not as encouraged. They feel she should have lasted longer. My personal opinion: the surgeon knew mom's condition prior to her hospitalization. She was/is so debilitated, he sees this as a great improvement. I feel the same way. I think that even though it was only an hour, she seems so much clearer than she's been in a long time because she is receiving all the oxygen she needs. It may take a little while longer for her to wean, but I think she'll do it!

Wednesday, October 24, 2007

Rough Days

The last two days have definitely been a mixed bag. First, the good news. I received a call yesterday from the genetics counselor who told me that I tested negative for the the BRCA1 and BRCA2 genes. Great news! This doesn't mean that my cancer doesn't have a genetic link, it just means that if it genetic, they have yet to discover the gene that is responsible for the breast cancer in my family. This in no way changes my treatment decision of a double mastectomy. I am forging ahead with that. It does mean that I won't need to have my ovaries removed.

This past weekend several of mom's cousins rented a few houses in town and had a get together here in North Beach so they could see and spend some time with her. My mom's Aunt Nell and Aunt Doris also came. It was so good to see family and although it really took it out of mom, she loved catching up with everyone. Aunt Nell is a retired nurse and worked her entire career as a nurse. As she told us early on, she doesn't have much, but she has wheels and time so we had arranged for her to come take care of mom while I was in the hospital recovering. On Sunday before the group left, Aunt Nell pulled me aside and told me that since she was returning in 10 days to help care from mom, she was offering to stay and help us out. I felt as though the clouds had parted, the sun shone through, and she (the angel) emerged. Mom, Gary and I whole-heartedly welcomed her help, even early!!

So I had my pre-op appointment yesterday morning. All systems go and countdown has begun. Towards the end of my appointment, I received a call from Gary. He and Aunt Nell had taken my mom to have a CT and bone scan. I was concerned that she would have a lot of difficulty getting the contrast down, but she actually did better than any of us expected. They had to lay mom flat to do the CT and because her lungs were pretty full, she had quite a bit of difficulty breathing. Gary was by her side the entire time and helped her work through it (that and bumping her oxygen to 8 liters!) He called me to let me know and we decided that she needed to go the ER.

It ended up being a wise choice. Her right lung was nearly completely full and the lower 2 of her 3 lobes were completely deflated. The pulmonologist who saw her in the ER felt that even though she was scheduled the next day to have the fluid drained, it was such a dire situation that he recommended to drain at least some of the fluid off. So he drained about 3/4 of a liter of fluid off. She was much more comfortable, but was still dehydrated. By this time is was 8pm and we'd been in the ER since about 11:30. We had been told they were going to admit mom to the hospital, but the ER doctor came in to tell us that the oncologist covering for mom's doctor was NOT going to admit her. Never-mind she was incredibly weak, hadn't had anything to eat all day, and had not gotten any IV fluids either. So here is was 8pm, by the time they get us discharged it will be 9pm (if we're lucky) and by the time we get home it would be close to 10pm. AND mom's not supposed to have anything to eat after midnight and we have to be up at 4am to get her back in time for the procedure. I explained all this ad nauseum to the ER doctor who was NOT happy the doctor wasn't going to admit her. So we got her home around 10. She was so pooped that we set her up to sleep on the couch; she just couldn't tolerate going up the stairs. We paged the surgeon who was going to drain her lung and do the procedure to keep her lung from filling again. The last information he had was that she was being admitted, so we wanted to let him know that the plan had reverted back to her coming in as an outpatient. We didn't request a call back, but he called us back almost immediately. Needless to say, he was pretty ticked off they hadn't admitted her. He told us that we wouldn't need to have her there at 6am, but to come around 7:30.

She slept very well (we have a comfy couch.) We arrived with plenty of time to spare and they let us wait with her before they took her back. The plan was to draw any remaining fluid off the right lung and insert the talc to help hold the lung to the pleural lining.They were able to finish in about an hour, but when they finished, her lung did not re-expand the way they expected. The drew off an additional liter from the right lung. After the procedure, her oxygen levels in her blood dropped very low and very rapidly. They put an oxygen mask on her. When that didn't work, they put in what can best be described in layman's terms is a breathing tube "lite" (or a LMA tube for you medical types.) They planned to let her lung reinflate and removed the tube. Again, things didn't workout as planned. She had some more distress and they had to intubate her and put her on a ventilator. Her blood pressure dropped very low also. All of this was in the recovery room. They asked Gary and I to come back and then they put us in a little room for the doctor to come talk to us. At this point I got a little nervous. When he came in, he explained what was going on and asked what her wishes were in regards to life support. Wait. WHAT??? Talk about a direct hit at the water line. We totally weren't expecting that. We had to give him an answer right then and there. Mom and I have talked about it, but she just had the procedure done and I felt we needed to give her body a chance to heal itself. Because of her debilitated state, it is going to take more time to heal. We were able to spend a little time with mom, but they were putting in a central line (a "major" IV) pretty quickly, so we couldn't visit very long. She did squeeze my hand and responded to my questions so that was a little encouraging. One of the doctors showed us her chest x-ray. You didn't have to have medical training to truly recognize
the extent of her pnuemothorax.

After we left the recovery area, it really started to hit me. Gary and I were able to further discuss her wishes for her code status. We decided to ask the doctor to make her a "chemical code." This means that if her heart beats erratically they can use drugs to try to correct it, but we don't want them to do compressions if her heart stops. She is so frail and weak that it would do much more harm than good.

It was a rough afternoon, but they got her into the ICU around 2:30. They had been able to stabilize her blood pressure and her blood oxygenation was doing well also. We were allowed to see her around 3pm. She was still responding to me; squeezing my hand. She snoozed for a time while we gave the nurse information. One of the chaplains came by and we spoke for a while. She is also a music therapist. She had her harp in tow and came into mom's room and played a while. It was really nice! After she left, mom woke up. I asked her if her backside hurt and she indicated yes. They were able to turn her and gave her some pain medication. She was much more comfortable. I explained what had happened to her and what the plan was. She was very lucid and was able to nod responses to 'yes' and 'no' questions.

She will stay in the ICU for a few days. The hope is that her lung will slowly re-inflate and she'll be able to ween off the ventilator. Time will tell.

I'm certain I've rambled away with this entry. I'm pretty exhausted and it has taken me two hours to get this done. Pardon any grammatical, spelling, or math errors... I'll try to keep the blog up-to-date so you can all be kept appraised of changes or improvements.

Sunday, October 21, 2007

Follow-up and Answers to Other Questions

I have several questions about previous postings, so I figured I'd respond because you may all be asking the same thing.

First, a report on the pup that wandered up last month. After two near-successful attempts, we've not been able to adopt out Lola, the rottie that "found" us. We keep saying there is no way we can
have 3 dogs, but after a month with us, she has inched her way into our household and our hearts. She has graduated from a rope as a leash to a full blown collar and leash of her own. She has her own bandana now (like the other girls), and she even has moved from a stainless steel mixing bowl to her very own dish. She's getting along just fine with the other dogs and Hudson, who usually wants nothing to do with strange dogs, is tolerating her very well, thank you. She has the sweetest disposition and we have just fallen in love with her. So Lola is officially off the market.

Mom has had a bit of difficulty lately. Mostly because her lungs have filled back up with fluid. We are looking forward to having the procedure done this week that should help things. Despite her fatigue, she is making wonderful progress. I've been taking photos of her wound. I've cropped these to show just under her arm where she had many small tumors. As you can see the second picture (taken today) the tumors are gone! This has happened in just under 4 weeks!! She still has a very long way to go, but progress is progress.

Life these days is all about improvising and adapting. When we ordered the Enercel (the homeopathic) we knew it would be given IV, but the thought never occurred to me how we were going to hang the stuff until the day it arrived. So this is what we came up with. Yes. That is a whisk! And no, we've not had scrambled eggs since mom started the Enercel. Hey, whatever works, ya know?

We've been told by so many that they are praying for us. Mom has a hard time keeping it straight because there are just so many. So, someone suggested we get a map. It took me forever to find just the right kind. A regular road map was too big for the wall, so I looked for a children's map. I looked everywhere, but no luck. Finally, I went into a local toy store. They said they didn't have any maps, but as I was walking out, the clerk said, "We have a placemat with all the states." It was perfect. You can see here what I've done so mom can see it from across the room. She loves it and it is SO impressive.

Many of you have been asking for our address. Here is the information:

PO Box 824
North Beach, MD 20714

Keep your emails and calls coming. We look forward to every single one!

Wednesday, October 17, 2007


Yet more changes.

I got another call from the breast cancer coordinator today. They have moved my surgery back to the original date of November 2nd. It's good that the surgery will be sooner, but I'm becoming aware that maybe I'm not as adept to change as I thought. When she told me, I felt like I'd had the rug pulled out from under me, again. I'd called everyone who was coming to help out and reschedule them, plus I'd mentally and emotionally reset myself for the new date. You'd think it would be easy to have the date pushed up to the original, but it really took me aback.

So things will work out. I'll be happier to get this done and over with. But I'm a bit emotionally exhausted from all of this.

Patience, patience, patience.

Monday, October 15, 2007

Falling Off the Wire Without a Net

I get a call first thing this morning scheduling my pre-op appointment to go have all of the preliminary blood work and other tests for the surgery. It was the last thing that needed to be scheduled, so once I received the call I felt things were all in place. I had set all the arrangements for friends and family to come take care of mom while I was in the hospital, and both of us once I was at home. Shortly after getting the appointment details, I received a call from the Breast Cancer Coordinator needing to reschedule my surgery. As she spoke the words, I knew what was about to follow. I'll interject to say that even though I knew what was coming (my surgery was being pushed back) I was thinking mere nanoseconds before she uttered the news, 'maybe she's calling me to push the date up.' Hope is such a strange, confused thing sometimes...

So I felt like someone had grabbed my ankles and up-ended me over the side of a ship and now I'm bobbing
in the ocean, flummoxed as to why it happened as the ship sails away. Okay, a little over-dramatic, I grant you, but here's the upshot. My surgery is pushed back a full 3 weeks; that's not the worst of it. It is scheduled a day before Thanksgiving. This involves so many more people than just me. I've coordinated 5 individuals to come and Gary has worked diligently to coordinate his schedule. We're now going to have to start from scratch.

'So why?' you ask. Well, I was told there is a woman who was diagnosed about the same time as I was, but she has invasive cancer. Due to reasons they didn't go into, she was not able to get her surgery earlier. Because she has invasive surgery, her case is much more urgent than mine.
Dr. Rodriguez, the plastic surgeon, is in very high demand... he is after all, the best! So they need to do it sooner. Sadly, I got bumped. It sounds harsh, but I'm completely empathetic for this woman. I know if I were in her position, everyday I waited would be a shear eternity of agony. Just knowing that the cancer could be breaking free and circulating in my body would be a little more than I could bare. My cancer is non-invasive and is still confined to the duct. While I want it out as soon as possible, I'm not in her position.

Patience, damn it. Patience!!

Friday, October 12, 2007

The Signs say "YES"

Isn't it strange that when you open yourself up to it, the Universe seems to send messages loud and clear to help you along your path? For me lately, it has been more about affirmation. I'm aware that some of my friends think my decision to have a double mastectomy is an overreaction on my part. I don't feel the need to defend my decision because I know what I've put into making it and the treatment is something that works for me. I've been told time and time again that this is a very individual choice. I'm certain that 10 women would come to differing decisions based on completely different motives. But I have tried to put myself in my friend's shoes to see it from their perspectives and I suppose I can see how people could think that I'm overreacting. But they've not walked any distance in my shoes.

I've just finished a great little book that The Martini Princesses in Charleston sent to me. It's called "The Victoria's Secret Catalog Never Stops Coming and Other Lesson's I Learned from Breast Cancer" by Jennie Nash. It is a very quick read and I highly recommend it to anyone. As I was reading I felt as though I could have written much of it. Her story completely affirmed the decision I've made to have a mastectomy.

Last week, my "old" friend Fish emailed me an article in Time about breast cancer. Of course, you know it (breast cancer) is all over the news right now since it is Breast Cancer Awareness Month. I read through the article which was very well written. A researcher at University of Michigan stated that women with early stage breast cancer go from diagnosis to surgery in about 2 weeks. Most choose less invasive lumpectomy but at least one-third of them are eventually unhappy with the decision. At least 50% of women didn't feel fully involved in the decision making process about their treatment. The kicker is that the more involved a women is in the decision of her treatment, the more likely she will choose mastectomy! By the time I have the mastectomy, it will have been two and a half months. I'm not sure what the average time to treatment is at University of Maryland, (where I'm being treated) but I think that having the time to fully consider ALL of my options, research information online, talk to other women and families who've dealt with breast cancer, and get a second opinion has been beyond helpful. I'm not sure if what Fish intended when he sent me the article, but it was certainly an affirmation for me.

Now I'm not going to sit hear and type that I'm not scared. My entire life (besides when I was a newborn) I've only been in the hospital overnight once, and that's when I was 5 and somehow got dehydrated. So being put under for 12 hours gives me the willies, not to mention spending 5 to 7 days in the hospital! Nevertheless, I am not deterred. All the signs the Universe is sending are saying ' Go for it!'

Wednesday, October 10, 2007

Hero of the Bigtop

Not enough has been said or written about the biggest hero of this entire ordeal... my husband Gary. This is a man who spends his nights in the ER saving lives; or as he jokingly says when he heads off to work, "I'm going to stamp out lives and save disease." Otherwise he'd put himself out of a job. There isn't much rest for the weary these days as he comes home to take care of my mom and me. This man has tirelessly cooked, cleaned, and run errands well above the call of duty. And all without a single complaint. He also has provided compassionate and loving care to his mother-in-law. He fixes her whatever meal she requests, empties her bedside commode, and patiently helps her up and down the stairs.

He has been dealt a seriously crappy hand. A wife about to undergo major surgery and a nearly bedridden mother-in-law. I try to tell him thank you regularly, but it just doesn't seem enough. My gratitude goes so deeply, words are just a bit lame. How in the world did I get so lucky?

Saturday, October 6, 2007

More of the Dog and Pony Show

When I think back about all that has happened over the last week, my head begins to spin. We've had a lot going on. On Tuesday, we received the Enercel, the homeopathic that will supercharge mom's immune system. We gave her the first dose Tuesday evening. At lunch Wednesday, mom called out to me. I was working on a very important report for work and was "in the zone." You know, one of those rare times where you find your groove and the juices are really flowing. I hated to set down my computer because I was worried that once the spell was broken I wouldn't be able to get back into it. But I raced upstairs because she rarely calls out. "What?" I asked with more than a little concern. "I'm famished!" I've not heard her utter these words in years! I took her lunch order and prepared it as quickly as I could. She decimated everything that was on her plate. Through the week, the appetite has remained quite good. This being one of the "side effects" of the Enercel. She also says she is starting to feel a little better; stronger. But we haven't yet seen any boost in energy, but she just looks better.

On Wednesday, Sandra (her best friend for over 50 years) arrived from Texas to help take care of
her (and me and Gary, too.) I was a little worried at first because any time that Sandra has come in the past, all they do is lay around, tell old stories and howl and cackle with laughter. I knew that with mom's diminished lung capacity, any lengthy conversation or laughter would completely exhaust her. But Sandra is a wise, caring soul. She has know exactly when to curtail any activity to give mom her rest. I think the visit is doing mom a world of good. And never mind all that she has done for Gary and me. She got to cleaning on Friday; something that we've just not had time for. The house is now sparkling clean. I've promised everyone that if I need help in anyway, I'll ask. But asking anyone to clean my house is just something I'm not capable of. I can never express the depths of my gratitude to her for doing this!

Thursday morning I was doing the daily dressing change for mom. When I removed the old dressing, I could barely believe my eyes. M
om's wound seemed to make a drastic improvement over night. The wound didn't look as "angry" as it had before. It seemed as though the tumors had slightly shrunk (one at her armpit was nearly completely gone!) The skin looked as though it was healing. The Femera is supposed to shrink the tumors, but we'd seen no improvement whatsoever until we started the Enercel. The thing that struck me the most was that her skin around her torso, once very rough and hard, was soft, supple and not discolored anymore. I am completely amazed!

I took Friday off from work. Three girlfriends from across the country came to North Beach to "love and support me." Our little group is called the "Loser's." We've come to know each other over the last 15 years through singing and touring. Diva's everyone, the name is derived from the fact that everyone is an amazingly talented singer, yet not one has a recording contract. So when we get together we have every bit the diva attitude with names to match. Several years ago, on one of our yearly gatherings, we came up with pseudonyms. We are: Bebe Barbosa, Foxy McMahon, Trouble Papanopolis, and me, KiKi del Fuego. Believe me, the names fit!!

Last night, we had a birthday party for mom. Her birthday is Tuesday. Gary made a wonderful Caribbean feast, we had presents, cake and ice cream. She loved it! She was beaming as we all sang 'Happy Birthday.' We blew out her candles for her as a group. Thank God someone had the foresight to not let her do it. Oxygen and fire don't make the best combination...

Monday, October 1, 2007

Another Outing...

Another appointment day for mom. She had to get an infusion to help correct her calcium. Since she has some possible cancer spots on her bones, the calcium is shifting from her bone into her blood so her blood levels of calcium are higher. Her doctor ordered once a month injections that will help the calcium move back into the bone. Getting comfortable has been a frequent problem for her; she's just got no meat on her bones! But we had some bright spots today. She said the infusion chair was very comfortable. (Bonus! Can we get one at home?) And when I told her that her Medicare kicked in today, she squealed with glee. It was very cute. She said she was feeling stronger than she'd felt in a while. It was, of course, Chik-fil-A day. On the way home I asked if she was up to stopping by a pumpkin patch to get pumpkins and mums. She loves the white Cinderella Pumpkins. Although she stayed in the car, it was a beautiful afternoon and she enjoyed watching me walk around picking just the right one. I found one that looked just like Cinderella's carriage (after midnight, of course!)

She was fatigued when we got home, but insisted that she get up the stairs on her own volition. She said that she is angry and frustrated today at her infirmity. She wants to have more energy. I think this expression is a good one. It illustrates that she wants to fight! I like that!! After resting a while, she stood up and with Gary's help walked to the stairs. I tended her "leash" as we call it (her oxygen tubing.) I'm usually helping her so I was struck by all of the activity in the rear. The three dogs were following her up the stairs matching her slow pace, not falling one step behind. There was barely enough room for me! Gary called them the pace team. They were all so concerned and looked like they would catch her if she missed just one step. Good helper dogs!

Saturday, September 29, 2007


Hot off the presses!!! I just received a call from Rose, the Breast Center Coordinator extraordinaire. (Working on a Saturday no less!) She informs me that my surgery is scheduled for November 2nd. "B Day" (as is "Boob Day.") Now I feel like things are moving and we are working towards something solid!

A Busy Week at the Circus

We had a lot going on this week. On Sunday, my father and his wife (David and Michele) came for the week to help out. I had a busy week at work and really appreciated not having to worry while I was gone during the day. They were very helpful with the mom's basic care needs, plus pitched in with household stuff as well. Needless to say, my diligent attention to housekeeping has gone by the wayside lately. They were wonderful in helping with dishes, dog walking, and even the dreaded "poop patrol" in the yard. (Thanks Dad!!!) They also did some relaxation techniques with mom. Dad, a former massage therapist, was able to really help mom with sore muscles. Michele, who has advanced knowledge in Reiki (an energy technique used in alternative medicine,) worked on her for quite some time. Mom said she felt very relaxed and energized after they finished.

That wasn't the only goings on. Mom had several visitors as well. On Monday, her cousin Regina and her husband Bill drove all the way from Front Royal, VA for a short visit. Despite her lack of stamina for such visits, mom was so happy to see them and they had a wonderful visit. Later in the week Regina's brother Robert and his lady friend Cindy stopped by for a visit. Mom looks forward to these visits so much even though they usually have to be cut short because she becomes quite fatigued. But the lift they give to her spirits is good medicine.

I had a few lifts myself this week. I received several "care packages" from Charleston. My friend Amy sent some "relaxing" lotion and one of the best cards I've seen in a while (hilarious!) And Amie, Ashley and Jennifer, ("The Martini Princesses") sent a box of Charleston love. (Thanks for the Benne wafers guys!!) For those of you wondering, Benne wafers are a Charleston favorite and you can't get them anywhere BUT Charleston. If you have the means to get them, I highly suggest you do! They are heaven!!

As far as "health" news, there isn't much to report. Mom is still doing the same; some days are good, others not so good. I'm still waiting for a surgery date... nothing to be alarmed at. The breast surgeon has to coordinate a date with the plastic surgeon who has been out of town. I should know something soon. I met with the genetics counselor last Wednesday. She affirmed most of what I'd already knew or had read. I plan to have the blood test done next week. More waiting, but we'll have plenty to keep us occupied. Mom has an appointment to get a calcium infusion Monday. Her best friend is coming mid-week to help. And three of my girlfriends are coming next weekend to "surround me with love and healing."