Thank you to everyone who has visited this blog in 2004. The support I have received from the blog world has been amazing. And here I thought I was doing this as a service. Little did I know that I would "meet" such kind people and that this would be a great tool for my family to stay so close and participate in my journey. I know in my heart that 2005 will be an amazing year of joy, good health, and hope (always hope!) for all of us!

Happy New Year!

I set out to write a jovial, light hearted Christmas wrap up, but somehow with this pensive mood, I think this could get deep. I had an epiphany of sorts this morning, though I hate to abuse that word this time of year. I was thinking about the holiday coming and going in the blink of an eye this year, as it does most. Once I start thinking, look out. You never know where my mind will wander.

I came into this holiday season with such doubts. I did not know how I would feel after surgery, I didn't know what kind of results to expect, and, frankly, it has been a year of great peaks and valleys. I wasn't sure where Christmas would land, a peak or a valley. I started to think about all the people who couldn't celebrate Christmas for whatever reason, whether it be for health reasons, emotional reasons, war, separation from loved ones . . . . To continue the list would be exhausting. I started to understand that no matter how I felt post surgery or what my results were, I had so very much to celebrate this year. Once I made the decision to be joyous, the bells started jingling and the star in the east seemed to shine brighter and brighter.

I heard a young man being interviewed on the local news today. He was at a mall returning presents. He said, and I paraphrase ever so slightly, "first I run around getting all this junk to pass out and then I have to take all the junk I got from other people and return it to get something I really want." The reporter even asked him about his use of the word "junk" to which he replied, "Well, stuff. . . gifts." It seemed the term "gift" wasn't even an afterthought, but an after, afterthought. Why does Christmas make people think they are entitled to receive anything. Truly it is a season about giving and about love. Obviously when one person gives, another receives, so perhaps receiving is an implied part of the season. It shouldn't be the focus.

This is the year that I gave the least, but received the most. I wasn't able to bake or pick out all the little things that I usually do, and I wasn't able to shop for fancy gifts. This year I was just able to be present. I talked with each member of my family near and far, I had the chance to spend time with my dearest friends, I was able to visit with friends and co-workers at our annual Christmas party, and this year we had the wonderful opportunity to spend more time with family that we don't see as frequently as in the past. There was so much laughter and joy and celebration. And yes, there were gifts as well, but it surely wasn't the focus. It was a wonderful holiday. Like the song says, the greatest gift I got this year was life. Nothing is more precious than that.


While I am all snug in the glow of family and holidays, I can't help but mention the devastation in Asia. My heart breaks for the many thousands of people who have lost loved ones in the earthquake and the tsunami. I found this information on www.redcross.org for anyone interested in helping out rescue and recovery efforts:

Financial support is the best form of assistance those wishing to help can provide. You can help those affected by this crisis and countless others around the world each year by making a financial gift to the American Red Cross International Response Fund, which will provide immediate relief and long-term support through supplies, technical assistance, and other support to those in need. Call 1-800-HELP NOW or 1-800-257-7575 (Spanish). Contributions to the International Response Fund may be sent to your local American Red Cross chapter or to the American Red Cross International Response Fund, P.O. Box 37243, Washington, DC 20013. Internet users can make a secure online contribution by visiting www.redcross.org.

I am usually that person that willingly gets caught in the spirit of giving this time of year. Baked goods made and delivered, gifts bought and wrapped with pretty festive bows (reusable of course), house decorated, holiday music playing (lots of singing too!). . . You get the picture. It's a regular Norman Rockwell moment. I typically overdo and by the time Christmas rolls around I am exhausted. I love, love, love to give. It gives me great joy.

This year is different. A little surgery slowed me down so no baking, no delivering (or driving for that matter), decorations are courtesy of my sister, a little singing but since I am not home alone I try to keep the damage to a minimum. . . This Christmas I have been forced to view the holiday from a different perspective. I can't help but think of the story of La Befana.

The are many versions of the Italian legend of La Befana, but this is the story I was told as I remember it. On their journey to follow the star, the magi met an old woman with a broom named La Befana. La Befana wanted to join them on their journey, but wanted to finish baking her sweets and cleaning her house before she left. The magi continued on their journey and La Befana realized she should have gone with them and set out to catch up with them so she too could see the Christ child. She never found them and never got to see the Christ child. Legend has it that she continues to fly around on her broom searching for the Christ child, stopping at every child's house and leaving each of them treats. The feast of La Befana is celebrated on the eve of the Epiphany (January 6th), the day the magi visited the baby Jesus.

So rather than being caught up with my chores and the baking and missing the whole purpose of the season, I get to experience this holiday at the foot of the manger. I won't miss the Christ child nor the love he brings to all of us. Yes, this year is different in so many ways for me. While part of me longs to bake and decorate and give gifts, the message this year is that it is much more important to prepare one's heart than one's home. The greatest gift is not wrapped in a bow. It is the love that was born on Christmas day and continues to be a gift to all of us.

It seems like eons ago I was in chemotherapy. The reality is I just finished six weeks ago. I tried to prepare myself for all the side effects and for the most part I was as prepared as anyone could be. When I was nearly half way through and preparing to switch to Taxol, several other patients told me I would prefer Taxol to the A/C. I wouldn't have as much nausea, but I would have other side effects, one being that any remaining hair like eyelashes and eyebrows would be lost during the treatment. I remember waiting and watching and noticing how thin they were getting. By the last Taxol treatment, I was ecstatic that I still had most of eyebrows and eyelashes. Who knew that six weeks later as the hair on my head was growing back in, I would be losing the brows and the lashes? I'm down to about 4 lashes and probably 4 brow hairs on each side, but that could be gone at this point also. Funny thing is that there is some new growth, but it just happens to be the part that I normally pluck (that nice patch BETWEEN the brows) . It's a joke, right? Who needs to pluck when there are NO eyebrows!

On another note, I was concerned enough about the swelling and my "Pecs of Steel" yesterday that I called in to the doctor. He was nice enough to come in just to see me and he assured me it was a case of things getting worse before they get better. My body is adjusting to so much. As long it doesn't get any worse, we are still on track to begin tissue expansion on January 10th. For now, I am to wear a sports bra for gentle compression. I was right to be concerned; however, if the swelling was accompanied by redness, heat, or a fever, then I really should be concerned. Swelling alone is a common side effect. To be on the safe side we are also doing one round of an antibiotic. This will stop any infection that may be starting up in there.

Well, back to my busy day of TV, crossword puzzles, and plucking. Recovery is tough work.

I was and continue to be thrilled that the drains were removed on Monday; however, my body doesn't seem to know what to do with the fluid. Suddenly, I have "pecs of steel" as well as underarms of steel (though that one isn't so catchy). Although according to St. Johns Mercy Medical Center's web site, swelling of the breast area is a common complication of mastectomy (a really well done site that thoroughly explains the mastectomy procedure). I really do feel as though my breasts may explode without notice. I wonder if that can be seen from space like Mt. Vesuvius or Mt. St. Helens. Perhaps it won't be the magnitude that will send villagers running for their lives, but it certainly feels like the same intensity inside my skin.

I've written a lot about the medical side of all this and haven't spent much time on the emotional or psychological implications of this procedure. Partially this is because I haven't allowed myself the opportunity to sit back and absorb the big picture from diagnosis to future lifestyle impacts and everything in between. I have simply taken this process on one step at a time handling each task placed in front of me. I'm sure that at some point in the future I may need to spend significant time sorting through my feelings. Or I may not. I may be stronger than I realize. However, I have had emotional days and feelings that I have had to address.

After my first post op appointment, the doctor told me it was okay to shower as long as I treated the incisions gently and managed my drains. No problem. I couldn't wait for a shower. Once I came out of the shower and was face to face with the mirrors, that first look was a hard one. I began to get agitated the longer it took to dry off and dress. Without warning, tears streamed silently down my face. I wasn't upset my breasts had been replaced with long incisions and swollen tissues. It wasn't even that I was disappointed that the breasts weren't there. I was comfortable with the decision to have this procedure so the results weren't shocking or upsetting. I was just sad to lose my girls. I mourned my loss that day.

I avoided the mirrors for the next couple of days while I adjusted to my new profile. What is left behind will transform over the next few months into a substitution for my former self. It won't be better or worse, it will just be different. The best part is that these ones will be cancer free. And that makes all the difference.

At the time of surgery, I had two drains installed to collect fluid that would build up around the incisions. The drains are called Jackson-Pratt drains or JP drains for short. Once this fluid level dropped to an acceptable level I would be able to have the drains removed. This can take anywhere from a few days to a few weeks. Today was my lucky day! The drains didn't hurt or bother me, they were just a nuisance. Joyce would have to strip the tubes a few times each day as well as empty the drains at least once per day. I don't know what she will do with all her free time now. ;)

One more step on the road to recovery. It feels great!

From Merriam-Webster's Online Dictionary:

Main Entry: com·pas·sion
Pronunciation: k&m-'pa-sh&n

sympathetic consciousness of others' distress together with a
desire to alleviate it

In addition to the practice of medicine, doctors these days have much to be concerned with especially in the area of law suits. In our litigious society, we have the ability to sue if we don't like the way the doctor looks at us, touches us, or talks to us. We can also sue if he really screws things up or we simply don't like the outcome and the proper spin is applied to make it appear as though it is the fault of the doctor or he/she simple didn't properly inform the patient. As a result there is a flurry of paperwork that must be signed, witnesses have to be present during patient/doctor interaction, and then of course there is the business of treating the patient. It is no wonder that the relationship between the doctor and the patient can be cold and impersonal. I don't dispute that patients should have this right, but its abuse has sent healthcare costs soaring and it has changed the way medical care is provided in general.

When fighting cancer, I want to know my doctor cares about me personally. I want to know that the details won't slip his mind because I am not important enough. I want to know that he will do everything in his power (and allowed by the mighty gods of the HMOs and beyond when necessary) to fight for me. I want someone who is on my side helping me have the greatest fighting chance to succeed. In order to do that, a doctor needs to treat me with compassion. He needs to treat me as a human and show that he cares.

I have interacted with so many people from the medical field in the last six months. While the vast majority of my experience has been positive, I have also observed something very unique about the people who work in the oncology field. The people drawn to this field are very special indeed. It isn't just a job, it is a vocation. I have been lucky to encounter excellent doctors, but of everyone I have met, one person stands out as truly demonstrating this characteristic.

Perhaps it is the friendly smile and the warm greeting. Perhaps it is the way he relates to my heritage or the way he pronounces my name. Perhaps it is the way he gently caressed my back after surgery knowing it was aching while I was sitting up for his examination. Maybe it is the way he comfortingly put his arm around me and lets me know that all is okay now. It could be his confidence, his skills, his charm, but mainly it is that he treated me like a human being with emotions and feelings and concerns. He empowered me to feel confident to make decisions and know that all would be okay. He is truly a healer.

Grazie mille, Dr. G.

The healing process has been full of ups and downs, though mostly ups. There are many things I wish I had known prior to this experience. With that in mind, I thought I would discuss how I am feeling and what I have learned so that anyone else about to have this type of surgery may be better informed.

The most uncomfortable time is at night. I can never seem to find a truly comfortable position. I started out sleeping on a big comfy chair with my feet up. This was fine at first, but as I sat in this chair during the day, it began to get uncomfortable to be in the chair too much. I tried the couch, but it was too soft and since I can't pull myself up with my arms I felt trapped (though my abs are getting very strong!) since I couldn't get off the couch unassisted. It was uncomfortable to lay completely flat in a bed and I had the same problem with feeling trapped. My sister finally had the brilliant idea to strategically place some huge, firm pillows on her guest bed and that has been the best option. I do slide down a bit at night and wake up in uncomfortable positions, but I have learned how to properly get up and move back into position. I typically only wake twice through the night now. I'm a little stiff in the morning, but I manage to come around soon enough.

Comfort has been an issue with clothing as well. Outer garments need to be front closure as I can't take things over my head and then get my arms in. I just can't have that type of motion in my arms. A zipper is best, but buttons work too. I came home from the hospital with a surgical bra and it was uncomfortable to say the least. When I went back for post op, I was given a prescription for a post mastectomy garment; however, there has been a delay for insurance clearance. This process has frustrated me more than anything. I have tried to wear other things; however, it is just not the same. If I knew I needed this, I would have started the process prior to surgery. If I knew this was going to be such a problem, I would have opted to pay for it myself and get a second one when the insurance clearance comes. There is no reason that physical discomfort that can be avoided is even an issue.

Of course I feel like I am whining, but the surgical bra actually caused physical damage to my body for having worn it so long. I tried going without it and wearing a stretchy tank top instead, but besides it being nearly impossible to put on, it didn't provide any support. The support, I have found, does help ease the pain. The plastic surgeon suggested a sports bra and I finally found one with front closure. It has been a good alternative. I also finally ordered the post mastectomy garment straight from the manufacturer and even with express ship, it won't get here until Monday (11 days post surgery). A lesson learned.

At this point in my recovery, here are the things I can't do for myself:
(thank God for sisters!)

• Open prescription bottles, unscrew water bottles, lift a full mug of coffee
• Wash my arms and under them, put my own socks on, tie my own shoes
• Pick things up off the ground, scratch my back, scrunch my sleeves up
• Lock on the car seat belt, close the car door (no reaching and pulling)

Here are the things I can do:

• Wash my face, take a gentle shower, dress myself (with the exception of the items above)
• Use the computer, use the remote control, talk on the phone if I use the speaker function
• Write notes, open mail, read magazines and books
• Most normal functions as long as I move slowly and as long as I don't try to carry, lift, or pull anything
  

So, for someone who is used to working many hours at one job, teaching college courses on the side, volunteering time, helping out with family needs, and trying to have a social life in there too, the frustration level is growing with my impatience. For someone who has taken a non-busy schedule view at the precious gift of life, I am grateful for each sunrise I see, each cool breeze across my face, and each smile I pass. If nothing else, cancer seems to put things into perspective.

Good news from Washington! Even though the federal budget is very tight, Congress increased funding for breast cancer screening even while other important programs were being cut. In the recently completed FY 2005 appropriations process, National Breast and Cervical Cancer Early Detection Program (NBCCEDP) funding was increased by $9 million. Congress also provided some increased funding for cancer research.

According to the Komen Foundation, "The NBCCEDP provides breast cancer screening, outreach and case management services for women with little or no health insurance. Since the establishment of the program in 1991, it has screened nearly 2 million women. While there is no known way to prevent breast cancer, early detection is critical, providing a greater chance of survival and more treatment options. When breast cancer is confined to the breast, the 5-year relative survival rate is over 95 percent. Timely screening mammograms could prevent more than 15 percent of all deaths from breast cancer in women over age 40."

If you would like to join me in thanking our congressional representatives, just click here. The Komen Foundation has done a great job of creating a form where you just fill in the blanks and click. It couldn't be easier.

It didn't take long before I no longer need any pain medication and was moving around just fine. I can even laugh without pain which is a necessity in my family! My first post op appointment was with the plastic surgeon. He was quite pleased with his work (always a good sign) and quite pleased with the way surgery went. The oncology surgeon was just as pleased during our post op appointment the next day. We went over the pathology report as well. I've read the report at least a dozen times just trying to absorb and celebrate the words, "no residual invasive carcinoma seen in multiple representative sections taken...."

Some people have been puzzled when I have mentioned the pathology report. The results showed that there was no residual sign of cancer. What this means is that the chemo worked at killing any remaining cancer cells in my breast. If the chemo worked there, it would have worked anywhere this particular cancer may have spread (though we have no evidence it had spread since my lymphnodes were clear). If cancer had been present, it would have indicated a more resilient cancer that potentially could require further follow up. So why remove the breasts if no sign of cancer? The type of cancer I had (emphasis on the "had") was invasive lobular (as opposed to ductal) which has a high recurrence rate and a high rate of spreading to the other breast. This action effectively reduces my recurrence rate to less than 4% over my lifetime. Those are odds I am willing to bet on.

The next few months will be a second puberty of sorts as we begin incrementally filling the tissue expanders. Once they have reached capacity, they will be removed and replaced with permanenet implants. I will spend more time talking about this reconstruction phase as the process continues, but that won't happen for another month. For now I just have to heal this very large wound so that I can move on. Unfortunately this means I must rest and not be active. This is going to be a long process!

Surgery now seems like a distant memory, well, except when I move or try to lift something. Before it gets too far from memory I wanted to share my experience.

I had always heard of the amazing reputation of the hospital where my surgery was performed. Loma Linda University Medical Center has been a leader in the medical community and I was very confident that I was receiving excellent care. I knew that this hospital was associated with the Seventh Day Adventist faith community; however, I didn't know much about the Adventists other than they are a Christian community. In doing my research, I found out that "The Seventh-day Adventist faith in today and in the future comes from seeing this life 'overflowing' with hope!" What better people to be affiliated with when it comes to cancer care and research?

Going into surgery was as expected. The various visits from doctors, residents, nurses, anesthesiologists, etc. I was also visited by a woman who asked if she could pray with me. It was a lovely way to go into surgery feeling calm, confident, and cradled in God's hands. Coming out of surgery was a completely differently reality. Until this procedure I had never had anything more than day surgery/quick procedures. This procedure went just four hours (less than anticipated). Beside the nausea related to anesthesia, I awoke to a harsh reality of pain. I could hardly breathe, move my head, wiggle a finger without feeling it in my chest. I could not move to make myself more comfortable or adjust my position in anyway. Strangely enough I was shocked by this. I just kept thinking about the people who have breast augmentation and are sent home the same day. While this was more involved, I was certain something must have been terribly wrong to feel this much pain. I had to be moved from my bed twice and remember looking into the eyes of a male nurse begging him not to move me because I was quite comfortable. I also remember clinging to his scrubs as they moved me from side to side.

Finally in my room that evening, I was able to see Joyce. I remember being so grateful that I would see her, because I was certain she could stop these people from moving me. One of the first things I told her was, "I had no idea." I was speaking of the discomfort and pain. One of the first things she told me was, "I had no idea this was a caffeine free campus." After 13 hours at a hospital on 3 hours sleep, I think her pain was equal to mine! As I settled in and met my nurses, I began to relax. I had such wonderful nurses. They were so kind and compassionate. One watched in disbelief as I got up within an hour of being there to use the facilities. One recurring theme I have had during every stage of my breast cancer journey has been allowing others to do things for me. This was no exception. As long as I could walk, I wanted to move around for myself. The morphine was also a big help in encouraging me also. As the evening progressed I realized that moving, though painful, actually made things better. By the next day I was sitting up, and getting out of bed on my own. I was off the morphine and onto other less reality altering pain meds. When I was asked if I wanted to walk out of the hospital or have my sister go get a wheelchair, I felt that if they thought it was possible, why couldn't I at least try? And without swinging my arms, I did walk out slowly and pale and on my own.

What a difference 24 hours made. And what a difference it made to be surrounded by caring nurses with positive attitudes. And what a difference it made knowing that any remaining cancer in my breasts was effectively gone. The worst hurdle of the last phase of treatment was over.

(Stay tuned for the next installment)

It seems as though a lifetime has passed between surgery last Thursday and today. So much has happened! While I plan to tell the whole story, I cannot go any further without expressing my heartfelt gratitude. Thank you so much for the messages, the calls, the email, and the good thoughts. I have literally been overwhelmed with support and love. Thank you especially for the prayers. God has once again answered all of our prayers generously. Surgery went very well and the pathology report is excellent: there were no residual signs of cancer!

I want to share all about the surgical experience, what I have learned about Seventh Day Adventists, the definition of compassion, more about pathology, and the joy I feel right now just five days out from surgery (quite a combination!). However, I have done a little too much today and could never handle this much arm movement without having to double up on the pain medication! Look for a flurry of posts over the next few days. Between telling my stories and and answering email, I should be occupied for a little while at least! (Thank goodness because I really am bored!)

I do have just one thought to share before closing. In the early days of this blog I included a scripture passage at the bottom of the page from Romans, "Be joyful in hope, patient in affliction, faithful in prayer." This passage came alive in my journey.

I remain always joyful.

I awoke today with the song "Changes" by David Bowie in my head. Someone please get it out!

But seriously, it is appropriate. Surgery is tomorrow. Once again I am so overwhelmed by the support and kindness I have received. I appreciate the prayers and good thoughts more than you know. I won't have the time today to personally thank everyone individually, but your emails, cards, and phone messages have lifted my spirits and given me the courage I will need for tomorrow. This surgery is a lengthy process and my sister may not be able to post anything Thursday night, but she will update as soon as she can.

Until I am able to post again, enjoy the guest blogs coming up and go out and make a difference today by raising awareness about breast cancer and early detection. And keep those prayers coming! :)