Let the Healing Begin

Bo and I went to see Dr. P yesterday for my first post-surgical visit. Armed with my newfound knowledge of lymphedema, I asked her to write a prescription for the compression sleeves. While she had the pad out, I also asked her to write a prescription for a right and left prosthesis and for the mastectomy bras. Now I just need to go get fitted for all of the above.

I asked her when my hair should start coming back full force, and she said that six weeks following the last treatment, the chemo drugs should pretty much be gone and my body should begin healing as it regenerates the different types of cells that were killed by the chemo. (It has been seven weeks since my last treatment, so now I keep looking to see if my hair is squeezing out of my hair follicles like playdoh out of the fun factory, but the growth isn't quite that dramatic.) It's funny, but because I didn't really experience any other physical effects from the chemo, I forgot that the drugs did also take a toll on other parts of my body and that the regeneration involves more than just hair. I feel so great now, that I expect I will feel really incredible once my body truly has healed, inside and out. As proof that I am "normal" again, I received a flu shot while I was there. Yea! My immune system is no longer compromised! Ahh.. to be a able to celebrate a flu shot is a wonderful (and weird) thing.

Of course, I still have radiation to get through, but she said that I should breeze through that. I had heard that it will make me tired, but she doesn't think that will be the case. "After six weeks, the cumulative effects may make you yawn around 4:00 p.m., but I doubt you will really be affected," she assured me. First, I have to get the last drain tube removed, but once Dr. H gives the go ahead, my sessions with the "burn" doctor will begin. I also asked Dr. P when I could begin exercising and she sees no harm in me returning to the treadmill, as long as I don't work the upper body. Yahoo! Another thing to celebrate - getting on the treadmill.

She did a physical exam and was impressed with the surgical site. She said it looked really good. Uh huh - for a skinny chick with no boobs and two huge scars, maybe. Donna, Dr. H's nurse practictioner, had said the same thing, and I wasn't quite sure how to take this. I mean, it doesn't look that bad to me, but it doesn't look that great either. I, of course, don't really have a basis for comparison. Dr. P said that some women have bumps and lumps left after the surgery and that it can be really uneven. She also said that since I was so slender I didn't look out of proportion like many women do after losing their breasts. I haven't really struggled with body image since the surgery, so I think I am going to be okay leaving things just as they are. I do want to have the prostheses for when I have the urge to look more shapely and less, uh, concave.

I had come prepared with my copy of the pathology report, so we spent a few minutes discussing some of the terminology I didn't understand. She was just so positive about my entire response over the past six months that her enthusiasm was contagious. "You have responded phenomenally well, and like you told me when you first came in here, there is no reason to expect that you will ever have to deal with this again." She did caution that this is the time that depression may set in because I won't be coming in to her office regularly for visits and treatment.

I think if this happens it will be more likely to occur after the raditation is completed, but reflecting on the past couple of days, I affirmed that, "Yes, I can sense that it may be starting to settle in just a little." (She said she could tell, but I am not sure what she was picking up on because I thought I was being my usual, cheerful, optimistic self...) I related to her that I had just read an article on menopause and it had explained the effects of decreased levels of estrogen. Since estrogen promotes feelings of nurturing, as the levels decline, women may become less likely to bite their tongues when they'd rather speak their minds, may be more inclined to express anger, and may start taking better care of their own needs than they had in the past and not be as focused on the needs of others. With visuals for affect, Dr. P agreed that I may start feeling like drop kicking family members soon.

It sounds like I have all kinds of emotions and new feelings and behaviors to look forward to (and Bo too) - some attributable to the chemical changes within my own body, and some the result of me redefining myself and my life following the diagnosis. Bo told Dr. P that he had been dodging the frying pan at home, and Dr. P offered to be on call to stitch him up as needed. The frying pan story is a bit exaggerated as violence isn't my thing (and the article didn't mention estrogen-deprivation may make it my thing), but Bo and I have had some heated exchanges in the past few days, a rarity for us. And he thought PMS was bad!

It would be unrealistic to think that such huge event in our lives would leave either of us or our relationship untouched. I guess our marriage can be compared to my body. My body has been through a lot, and I have the scars to prove it, but I have chosen to take the necessary actions and make the necessary lifestyle changes to be even stronger and healthier than I was before the cancer. Bo and I have a choice to make too. We can use this experience as an opportunity for our marriage to grow, and we can apply the effort necessary to build an even stronger, healthier relationship than we had before... or not. I know our marriage was already pretty fit and healthy before the diagnosis, so now we just need to commit to working together and taking the actions necessary for us to heal, regenerate, and grow even better than we were before. The long term prognosis is very good. I will keep you posted...

Tea and Talk

Back in September, my friend Angelia, gave me a wonderful gift. She signed both of us up to attend a retreat for breast cancer survivors, an annual event organized by Dr. D, my radiologist. (The psychology of it is kind of strange… I had seen the flyer at the Women’s Imaging Center, but because I still had the tumor in my breast, I didn’t consider myself a survivor yet, and so I wasn’t planning to go to the retreat.) Angelia, knock on wood, hasn’t had breast cancer, but has spent a fair amount of time at the Women’s Imaging Center. When she saw the flyer, she immediately called me and asked if she could sign us up.

I am so glad we went. The retreat was wonderful. The day was spent with 20 other women who had had breast cancer or who were currently undergoing treatment for breast cancer. We were treated to yoga (by my instructor, Joy), a chair massage, a drumming circle, tea with the doctors, discussions with a counselor who works with individuals dealing with serious illnesses and their families, and really yummy food. The day also offered the opportunity to spend time with others who could really understand and relate to the shared experiences of breast cancer as well as an opportunity to hear each other’s unique perspectives.

It was at this event, I met Renee, a woman who was diagnosed with breast cancer in her early 50s and decided her approach to overcoming the disease would be humor. Thus, her alter ego was born. An instructor at the William and Mary Law School by day, Renee becomes the Good Health Fairy when a different kind of assistance is in demand. This attractive and dignified women dons an elegant evening gown and tiara, ties her pink high top tennis shoes, and armed with wand, goes where smiles are needed. It is not just our heroine’s costume that elicits smiles, but her own bright countenance and sincere concern for all. Her presence can’t help but warm the heart and spirit.

Due to the nature of breast cancer, and its typical onset being later in a women’s life, most of the other women at the retreat were in their 50’s, 60’s and even 70’s. There was a woman who was 35, and another who was 39. I began to talk to Renee about how many wonderful breast cancer survivors had reached out to me in love and support, but before that day, I hadn’t found any in the Williamsburg area around my own age. She agreed that breast cancer at any age is a scary experience, but that younger women may be dealing with different issues, like raising small children. Thus the seeds for “Tea and Talk” were planted.

Our heroine collected names and e-mail addresses and shortly after our initial conversation, sent an invitation to five young breast cancer victors to meet at her home on a Sunday afternoon in October for tea and talk. Our second gathering was this past Sunday. Three of the original five of us were in attendance, and we were joined by a lymphedema specialist, Amy, from one of the local oncology practices.

Amy was great to share both her Sunday and her extensive knowledge of lymphedema with us. I became a little overwhelmed by the information, and as I expressed my initial response to it all, “This really sucks!”, my voice began to quaver, and my eyes became watery. Renee went in search of tissues. You survive the cancer and its severe treatments, you think everything is going to be fine and that you can return to your pre-cancer state of health (or better) and then you learn that you have to deal with the risk of lymphedema the rest of your life. It does suck, but how wonderful that I could be in a room with three other women who could understand my pain and frustration and who could both validate my feelings and encourage me.

Like all the other times on this path when I received new information that wasn't what I may have wanted to hear, I just needed a little bit of time to absorb, adjust to, and accept what I heard. Here's the lowdown in one paragraph or less: Because most of the lymph nodes on my right side have been removed, my lymphatic system is compromised. This puts me at risk for severe swelling of that arm if the lymphatic fluid isn't able to drain properly. I should wear a compression sleeve and glove from this point forward when I fly or when I am exercising. I shouldn't go into hot tubs or saunas. I shouldn't lift anything heavy, even grocery bags, on that side, or carry my purse on that shoulder. I have to be careful not to get any cuts, bug bites, sunburn, etc. on that arm, hand, or surrounding area. If I go for a full body massage, I shouldn't have the arm or surrounding areas massaged. (Alas, this last one will have little to no impact on my life.) When I write it down now, it doesn't sound that bad, and it really isn't in the grand scheme of things. Afterall, I am alive, and that is the most important thing, but it is still just a big pain in the butt, a lifelong health consequence of the cancer I thought I could put behind me.

Amy mentioned some of the symptons that would warrant a call to your doctor. "Which doctor?" I asked. "I have one who poisons me, one who burns me, and one who slices and dices me." Ironically, while it is the radiation and surgery that puts one at risk for lymphedema, it is the oncologist who pretty much coordinates the various components of treatment, so Dr. P is the one I would call. The overall risk of lymphedema is pretty low, but one of the woman in our group does have it and was able to relate her experiences. The good news is that I am now armed with information and can take the necessary precautions. I left the group feeling a little depressed but also buoyed by the strength and support of my new friends.

A Return to the "Routine"

This past week saw our lives return pretty much to their pre-surgical routine. After nearly two weeks with company, our last guest departed last Sunday morning. My brother, Jeff, stayed with us for nearly a week at the time of the surgery, and even though he wouldn't do windows or wounds, he was still handy to have around for entertainment purposes. The boys love to wrestle with their Uncle Jeff, and he complied with their frequent requests. Jeff and I played countless games of Scrabble, most of which he won. (In our family, when it comes to Scrabble, there is no mercy shown, apparently not even for the recently hospitalized or body part-deprived members.)

Shortly after Jeff's return to Massachusetts, my friend, Ann, arrived from Blacksburg for several days to keep me company. She was one of my Mom's best friends and is like a second mother to me. The boys know her as Nanny Ann, and I refer to her as their Irish Memere. Then, another dear family friend, Patrik, aka Blue Toenail (I think there is great potential for a band names here), visited over the weekend. He lives in Sweden but was in Kansas on business and figured since he was "so close", he would stop by to see us. I am very glad he did. We hadn't seen him in the three years since his last visit to the states. Nothing much has changed except he has more hair than me now, but not by much!

(I haven't obsessed over the topic of hair lately, so I may as well provide a little update: It only took a week to fall out, but it sure is taking its sweet old time coming back. When it fell out, I noticed it departed in the male pattern baldness manner - first in the front and top and then on the sides and back. Its return is much more gradual, but in the same manner. I have noticeably more growth on the sides and back than in the front and on top, but even if the "comb-over" were possible, I just don't think it's me. The hair is thin, but what is coming in seems to be kind of curly, as I have heard it might be. There is more gray mixed in than I would like, but as Bo reminded me, "It is hair." Good point. There is not much progress on the eyelash or eyebrow front, but I am sure that once the chemo is fully out of my system, which should be very soon now, I will have a flurry of new growth everywhere. Due to the blatantly unjust nature of chemo, the one place where the hair seems to be making a quicker comeback is on my legs. Last place to lose it, first place to regain it. Well, if that is a sign of my hirsute future, I will take it, and I will never complain about being hairy again!)

I took two more days off before returning to work on Wednesday. Since I have a home-based business, returning to work wasn't a significant event. It merely meant commuting from my bedroom to my office sometime during the morning hours and getting back into the routine of work. I was able to catch up on e-mails and phone calls, and I went to my weekly networking meeting on Friday morning.

Of course it wouldn't be a routine week these days without a visit to one of my many doctors, and this week, it was back to the surgeon's office on Friday. I saw Donna again, and she removed drain #3. For some reason, it didn't hurt that much this time - maybe because I knew what to expect. For the first time ever, I went to the office without Bo (he was working), but Sharon, one of the nurses, graciously allowed me to squeeze her hand during the drain removal process. I also had fluid build up on the left side, where the drains had already been removed. It looked like I was growing another breast, but it was quickly "deflated" with a syringe.

Donna mentioned that she had spoken to Dr. H, and he said we definitely needed to proceed with radiation. I asked if Dr. H was otherwise encouraged by the pathology report, and she said, "Well, he would have preferred no positive lymph nodes." Yea, me too. I always seem to leave that office in such a funk. Dr. P focuses on the 25 lymph nodes that aren't positive. Dr. H focuses on the two that are. It is fascinating to observe first-hand how the different attitudes of the doctors can have such a dramatic effect on a patient's own attitude. Both doctors have all of the same clinical information about me specifically and about breast cancer in general. From my very first visit with him though, I have felt like Dr. H has been much more doom and gloom about my situation than Dr. P. Interestingly enough, also from the very beginning, Dr. H has emphasized the importance of maintaining a positive attitude, so I am confident that he is unaware of how what he says or doesn't say has a negative effect on me. (I probably tend to read more into things than the average person though.) That all being said, I am glad he is my doctor. He is an excellent surgeon, and I have never doubted for a single moment that he is 100% committed to my health and well-being.

I am still draining copious amounts of fluid from that last drain, so if I am able to give thanks for its removal prior to Thanksgiving, I will be surprised. I am anxious to be drain-free for several reasons. While the weight of this last drain no longer drags my "shape" south, it does limit my movements somewhat. I can't exercise yet, and I really miss the mood enhancing endorphin release I was getting from my almost daily appointment with the treadmill. I still have to be careful how I sleep, too. Also, I haven't been able to take a shower or real bath in over two weeks! It's not as bad as it sounds though. I am able to get in a bath tub with a few inches of water and use a wash rag to clean up. I don't seem to be driving people away in droves, so I guess it is working. Nonetheless, I am looking forward to a long, hot shower, or a deep, luxurious, bubble bath one of these days soon! It is so easy to take for granted these simple pleasures in life. It is a lesson I hope not to forget once all of "this" is behind me.

The Pathology Report

Bo and I returned to the surgeon's office on Thursday, and I was able to have two of the four drains removed. I asked Donna, the nurse practicioner, if it would hurt, and she said she doesn't get many complaints. That is because people are apparently speechless after stifling back their screams of agony! She first had to wrestle with the tight stitches Dr. H had placed to hold the drain tubes in place, and after she was finally able to snip those, she then pulled the drain mechanisms, all six inches worth, out of my body. Ouch! I didn't want to be among the few complainers, so I just grimaced furiously and squeezed the daylights out of Bo's hand.

I have an appointment on Monday to remove the other two, provided the amount of fluid draining from each is fewer than 30 ccs in a 24 hour period. At this point, it looks like I am going to have to reschedule as the drain tube closest to the area where the lymph nodes were removed is still draining in excess of 60 ccs daily. I have mixed emotions about that appointment. I want those suckers out for sure, but I just don't relish the removal process.

When I first arrived and as the nurse's aid checked my blood pressure, she mentioned that the pathology results were back. Then Donna walked in, and I was trying to read Donna's demeanor and expressions as she was doing her thing with the drain tubes. Was she artificially cheerful or just her characteristic gregarious self? Did she seem nervous or was she just intent on causing me as little physical pain as possible as she removed the drains? Here I was driving myself crazy, making interpretations about the pathology results from Donna's behavior, and it turns out that Donna didn't even know they were back. She was seeing the results herself for the first time as she read them to me and Bo.

Basically, Donna's summary was that the cancer had responded to the chemo and that I had two out of 27 lymph nodes test positive. I had some questions she was unable to answer, and I asked if I could see Dr. H. She said that he was busy preparing for a big presentation and that he was soon undergoing surgery himself and as such would be unavailable for awhile. She said because my case was an unusual one (not a distinction one wishes to have at time like this), that it would most likely go before the tumor board again for review, but she was thinking radiation would be in my future. (By unusual, I believe she was referring to the seemingly sudden onset and aggressive nature of the cancer. ) She offered me a copy of the pathology results and told me she would call me about the tumor board, as she didn't know who would present the information in Dr. H's absence.

So, I walked out of the office, report in hand and nerves on edge. Remember that whole new attitude thing I wrote about a couple of days ago with such bravado? It had completely disappeared as I read the report and interpreted the medically terminology as negatively as I possibly could for reasons that defy explanation. Despite my generally optimistic outlook, in the absence of information, I have this debilitating habit of always assuming the worst. I was approaching the ledge, and Dr H was not available to pull me away (or push me over).

It was about 4:30 p.m., so I called Dr. P's office, knowing that if I didn't reach her that afternoon, she wouldn't be available again until Tuesday. I couldn't go the whole weekend applying my own interpretations to the report. The receptionist told me that she would relay the message to Dr. P but because it was so late in the day, she didn't know if Dr. P would call me back. I left my cell phone number, optimistic that Dr. P would sense my state of mind and respond in her usual competent and compassionate fashion. I also called my brother, John, whose good friend is an oncologist, to see if I could fax the results to Joe in the morning for deciphering. Then I waited.

The report pretty much confirmed much of what we already knew about the type of cancer: Infitrating ductal carcinoma, well differentiated, estrogen receptor positive, progesterone receptor negative, her-2/neu negative. It also indicated, among other things, the following: there had been prominent therapy effect, two out of 27 lymph nodes tested positive for metastatic carcinoma (largest focus 7 mm), the margins were negative for malignancy, the size of the invasive component was 1.8 cm, the tumor was multicentric with multiple foci of residual infiltrating ductal carcinoma in upper outer, lower outer, and lower inner quadrants.

See what I mean? What exactly does all that mean? What I did know is that the tumor at the time of the initial diagnosis, measured 3.5 cm. by ultrasound imaging. After the first four chemo treatments, it was 2.6 cm, and it was now measuring 1.8 cm. so I interpreted that favorably; although, I wish it had totally disappeared. There were other suspicious areas found by the initial ultrasound, but they were never biopsied since I was having a mastectomy, and from a treatment standpoint, it really didn't make a difference if they were cancer or not. Turns out they were cancer afterall. (I keep going back to how a mammogram in March could have possible missed multiple tumors that had infiltrated three out of four quadrants of my breast! I guess we will never know.) I took the word "residual" to be a positive thing, but again, I wish that the cancer had been limited to the one quadrant and that it had disappeared altogether.

I was very discouraged that I had two lymph nodes test positive, even after all that chemotherapy. I wasn't sure how to interpret that since only one lymph node was detected during the initial ultrasound and it had tested positive, but the subsequent PET scan and MRIs had detected no lymph node involvement. Had it spread while I was undergoing chemo?

The pathology for the left breast showed microcalcifications and atypical ductal hyperplasia - aka - precancer. We make a number of significant decisions in a lifetime. Many times we never know if we really made the right decision. Many times we convince ourselves we made the right decision because things turn out okay and we have no way of ever knowing how things would have ended up if we had taken a different course of action. In this case, I have validation that I absolutely did the right thing and that my intuition was right on. I don't think I ever would have second-guessed the decision to prophylactically remove the left breast, but it sure feels good to have confirmation that I most likely averted a second trip of this life changing journey I plan to travel only once!

My cell phone mercifully rang during dinner, and it was Dr. P. Thank God for her! She did a very effective job of pulling me back from the ledge. In fact, she was enthusiastic about the results, saying that we had "nuked" the cancer and that what remained was "swiss cheese." As many times as I read that report, I never saw the words "nuked" or "swiss cheese", so I really appreciated her interpretation. She said that it would have been great to have a complete response, but we knew that wasn't the case all along. She was glad to see that only two lymph nodes tested positive, stating that the risk of recurrence is much lower when fewer than three lymph nodes test positive. She mentioned two former patients with inflammatory breast cancer, a more serious type of breast cancer, who both had two lymph nodes test positive following neo-adjuvant chemotherapy, and years later, are still cancer-free. She also believes the cancer is affected by estrogen and that hormone therapy will be very effective for me.

I felt so relieved after speaking with her. I have a large list of questions, as she has come to expect, for my next appointment with her on November 21, but for now, I am content just to hear that the pathology results were encouraging to her. So my kick-butt attitude was restored during our second course of dinner that evening, as its vulnerability was also acknowledged.

A New Look

I am so anxious to hug my boys as they get off the bus. It has only been a day since I last saw them, but we have much to celebrate. The first thing Clay says when he greets me is, "Hey, Mom. Can I see your breasts?" Oh my. "Honey," I respond, "I haven't even seen my breasts yet!" That was remedied the following day when Bo and I went back to the surgeon's office for the bandage removal. I wasn't sure what to expect or how I would react, but when Donna was finally able to peel off the sticky bandages and I caught the first glimpse of my new look, I looked at Bo and said, "Oh. It's not that bad, is it?" He agreed. It wasn't shocking or disturbing or gross or disgusting. It just was.

I have about an eight to ten inch incision on either side, running diagonally from under my arm and down towards the center of my chest. Those are stitched and covered with clear tape. I also have four clear drainage tubes emerging from holes below where my breasts used to be. These are used to drain fluid from the surgery site down into these rubber grenade looking bulbs. I feel like Doc Ock (Spiderman's nemesis) with these 12 inch tubes dangling from my chest. Luckily, my handy dandy surgical camisole has little pouches on either side to hold this equipment.

Before we left the hospital, a nurse's aid had shown us how to clear and empty the drains and had instructed us to do that several times a day, recording the amounts each time. On Friday, Donna, the nurse practicioner, reviewed that procedure with us and also demonstrated how Bo should swab the drain openings with alchohol and antibiotic cream once a day and apply new dressing. This is our newest form of intimacy! Before the surgery, someone from my networking group asked me if Bo would be able to handle dressing the wounds. I responded to him, "This is a man who guts deer. I think he will be okay with it." And he has been. In fact, the doctor ordered home health care service for us, and I declined it because we have been doing fine on our own.

I am scheduled for another visit to the surgeon on Thursday afternoon, and at that time, two of the four drains will be removed. The remaining two will be removed early next week. Luckily the weather is now cool enough for sweaters and sweatshirts, so these "accessories" aren't that conspicuous when stuffed up under my shirts. They are merely a temporary inconvenience.

I showed the boys the results of the surgery, and they seem remarkably unfazed by it all. They were most interested in the huge deep purple bruise down my left side, how it got there, and if it would go away. At one point, Clay asked me if my breasts would grow back, and I explained that the capability of regenerating body parts is exlusive to a small number of creatures, human beings excluded. Ah, to be like a starfish....

Cole asked me if I was going to get new breasts, and I told him I hadn't made that decision yet. (I had mentioned to him months ago that I might get plastic surgery, and he wanted to know if my new breasts would be hard. Plastic surgery is such a misnomer. In fact, Dr. B, the plastic surgeon told me that the latest, state-of-the art implants are called gummy implants as they resemble the consistency of gummy bears.)

People have asked me if I am doing okay emotionally, and the answer is a definitive "yes". I guess the word that best describes how I feel is "relieved." The cancer is gone, and I have eliminated the possibility of ever getting it in the left breast. The probability of a local or distant recurrence is small. I feel lighter, both figurately and literally. Sometimes I wonder if I am in denial and that someday all of this will just suddenly register, but I think not. Life is good.

From a physical standpoint, I feel great, too. I stopped the Oxycontin and Percoset last Friday, as the pain was minimal, and I prefer not to take drugs unless absolutely necessary. I do feel a little tight around my chest area and under my arms, and while I have nearly full range of motion of my arms, if I stretch too far, it hurts a little. Once the drains are removed, I will be able to get physical therapy to help restore strength and flexibility, make the skin supple, and reduce my risk of lymphedema. I have a new appreciation for my body and am anxious to get it into top physically shape and care for my temple!

When I returned from the hospital, I was paradoxically ten pounds heavier than when I went in. I thought I would come home lighter because I would be minus two 34B breasts, but I hadn't counted on being pumped full of i.v. fluids. I couldn't even button my jeans so I had to retrieve a pair of my "big jeans" from my closet. I have been wearing Bo's flannel shirts because they are loose and comfortable and provide easy access to the drains. When I first looked at myself in the mirror fully dressed, I thought, "Whoa, I haven't been this flat since I was ten years old." Combine all that with no makeup and no hair under my headware of choice, the ball cap, I feel like a character from the old Saturday Night Live skit, Pat, whose gender no one could ever determine.

However, I don't think a guy would wear the cute little lady bug earrings I have been sporting since coming out of surgery last Wednesday evening. I had told Bo a story about Clay finding a lady bug at the playground the weekend before my surgery, and how it somehow ended up crawling around the brim of my cap. I took this as a sign of good luck, so Bo went out and bought a pair of lady bug earrings for me before I went into the hospital. I couldn't wear them during surgery, but I put them on right after.

The lady bug earrings needed some reinforcement on the gender identification front, so I decided to experiment with the "puffs" that came with my surgical camisoles to give me a little shape while I await either the prosthetic fitting or reconstruction (or maybe neither...) They are actually more like cushions and give me way more shape than I ever had before. The only problem is that the camisole is weighed down by the grenades, and I find my shape sinking towards my abdomen!

So my new look is evolving, and as the fluid rapidly departs my body and the ball caps gradually depart my wardrobe, what is left as my body returns to physical health is a new attitude, a new inner strength, a new level of confidence, and a new sense of self that has nothing to do with my appearance and everything to do with being a survivor on this life changing journey that is cancer.

I Don't Remember Signing Up for This

Bo and I arrived at the hospital on Wednesday two hours before my surgery was scheduled, as instructed. Dad and Jeff followed us there. Before exiting the car, I carefully applied "Fire Down Below" on my lips. Bo said that they would probably me take it off (the pre-op brochure instructs you not to wear lotion, makeup, or nail polish) and that I should wait until after the surgery to put it on. I told him the book was not called "Why I Wore Lipstick After My Mastectomy" and proceeded to walk into the hospital, face naked and pale except for the bright beacon of color painted on my lips.

Betty was already in the waiting area, and we managed a quick hug before I was immediately ushered to the pre-op area where I was converted from "civilian" to patient in the 30 seconds it took to remove my clothing (and dignity) and don the infamous hospital gown, opening in the back. A nurse began the process of taking my vital signs, obtaining signatures on required paperwork, inserting the i.v., and explaining the day's events to me.

Since I had already been through the pre-op process for my porta-cath insertion back in May, I was somewhat knowledgeable of the protocol. This was a good thing since I found myself needing to be a more active participant in the process than passive. (Seriously, this had nothing to do with my control freak tendencies. The staff seemed busy or distracted or something. I was really, really nice about it though, of course.) For example: Dr. Hoeffer wanted the i.v. on the arm that was not undergoing lymph node removal (left side), but the nurse was getting ready to insert it on the right side, mistakenly thinking that the total mastectomy occuring on the left side was the more comprehensive procedure. I set her straight - no reason to subject my body to any more assaults than absolutely necessary. Also, for some reason, my paperwork did not include the porta-cath removal, so I had to remind the staff several times to correct this omission, and I was finally given corrected paperwork to initial. (I was not leaving that hospital with that thing in my chest!) Then, as they were getting ready to wheel me out, I pointed out that I hadn't received my Jiffy Pop hat yet. (It is a silver metallic chef looking cap that keeps your head warm during surgery in the chilly operating room.) They had forgotten both the cap and the slippers for my feet.

While I was supervising the pre-op procedures, I was also visiting. I was allowed two visitors in my "suite" at a time. Bo stayed with me the whole time, and Jeff, my Dad, Betty, and Jodie also came in one at a time to wish me well. Jodie brought me a coffee cup containing a big bag of gummy bears. She was afraid I would find the mug too irreverent under the circumstances and almost didn't buy it for me. I am glad she did. When I read it, I burst out laughing. It said "I don't remember signing up for this." The sentiment and the timing were perfect. When she left, I almost tried to sneak out behind her, but the tell-"tail" (pardon the pun) hospital gown distinguished me as a patient and prevented any escape.

Dad came in next, and he was very quiet and solemn. I know how hard this must have been for him - to be forced to relive what he had experienced with my mother 25 years ago. Also, I think when someone undergoes the transformation to patient, it almost seems to diminish the person and make them appear more vulnerable and weak. When you see someone lying on a hospital gurney, in a gown, with an i.v. stuck in hopefully the correct arm, you can't help but experience them a little differently from the night before when they were fully dressed sitting across a table from you engaged in a conversation about say, the latest political scandal... Plus, I am his little girl, and I am sure it has been painful for him to watch me deal with this diagnosis and its attack on mind and body, helpless except to love and support me. Nonetheless, he has been there for me every step of the way, babysitting the boys, spending time with me, listening to me, offering financial support if needed, helping me navigate through this latest challenge in my life, steadfast and unwavering in his role as my Dad and one of my greatest and most constant sources of strength.

Jeff was next, and he hung out for awhile. (Pre-op is an excruciating two hours of waiting for the inevitable.) While he was there, the anesthesiologist, Dr. M came in to introduce himself. The first time I caught a glimpse of him, I thought he must be fresh out of med school, but upon closer inspection, I was relieved to see some gray hair in the sideburns poking out from under his surgical cap. He said that Dr. H had reserved the operating room for three hours and 4o minutes, and that knowing, Dr. H, the surgery would take three hours and 40 minutes. "Dr. H. is very thorough," he explained.

I advised Dr. M that I believe in the power of the subconscious and that even though I would be under anesthesia, my mind would be able to hear what was being said. Therefore, would he please say only positive things during the surgery such as, "You are healthy" and "You are going to feel great when you wake up"? I told him that he could even throw in a couple, "You are beautiful"s, that Bo wouldn't mind, under the circumstances. I also informed him that my hypnotist had suggested I hear the message, "You will wake up feeling a little bit hungry." (She had explained to me that you can't feel hungry and nauseous at the same time.) He was very good natured about my request.

After Jeff departed, Betty came in, but she didn't stay long. She wanted me to have some alone time with Bo before they took me away. She assured me she would be there when I woke up, even if it was midnight.

Dr. H stopped by to see me. One of the pre-op nurses told me that if any of them (the nurses)needed surgery, Dr. H is who they would choose. This was reassuring to hear, although at that point, it would have been a little late to change surgeons. I had the power of the subconscious mind conversation with Dr. H during my last surgery when he "installed" my portha-cath, but I reminded him today and asked him to communicate positive messages during the surgery. He agreed that he would tell me that we had kicked the cancer's butt.

The three nurses who would be assisting in the operating room also came by to introduce themselves, and I advised them of my subconscious mind beliefs. They were all very nice, and one of them even said she absolutely agreed with me. The other two smiled at me kindly.

During the interminable waiting, I went ahead and signed the Living Will and Medical Advance Directive document. I selected Bo as the primary decision-maker but asked him to please get a majority vote before pulling the plug. I have never heard of anyone dying during her mastectomy, but the thought crossed my mind, "What if I don't wake up? I will never see my boys grow up. They will never know how much I loved them. Life will go on without me." These thoughts didn't really consume me, but when the nurses said it was time to go and administered a drug to relax me, I began to cry as Bo kissed me and I was wheeled away.

Evertyhing got fuzzy after that. I remember someone asking me to hoist myself up on the operating room table, and I had to stretch my arms out on these boards on each side of me. Then either the last thing I remember before going under or the first thing I remember when I woke up was feeling someone putting anti-embolism socks on my feet. Time and reality blurred for me then and there.

I woke up up in the recovery room. It was about 6:45 p.m. I asked how long I had been in surgery, and it was just about 3 hours and 40 minutes on the dot. Talk about precise! I stayed in recovery until about 7:30 p.m. The nurse observed that I was in pain, and I agreed with this assessment so she gave me something through the i.v. It flushed the pain right out of my system but only for a couple of minutes, and then the pain moved right on back. It was mostly under my right arm where the lymph nodes had been removed. I asked her if I could have more pain relief medicine, and she said that I could but that I would have to wait another 15 minutes in recovery to make sure I was okay. I was anxious to see everyone so I asked if I could just get something for the pain once I was in my room. She said "yes".

I asked if my family had been notified that I was done, and she said that Dr. H had already been out to talk with them. The nurse said that I could be released to my room as soon as Dr. H finished the notes on my case. I could see Dr. H sitting at a desk talking on the phone. At some point, he began dictating notes. I was trying to hear everything he said, but I was too far away and caught only the occasional word. Finally, he walked over and told me that everything had gone well.

The nurse had already called down to the waiting area, so Bo, Jeff, Betty, and my Dad were waiting outside my room when I was wheeled into the... maternity ward! (How appropriate. After all, I had just delivered... a tumor.) I was so thrilled to see them. I had a big smile on my face, and I waved as I approached them. I felt like I was on cloud nine. I don't know if it was the anesthesia drugs or just the sheer joy of knowing the cancer was out of my body, but I was exuberant.

Betty asked me what brand of lipstick I applied as it was still on my lips. I am sure I was quite a sight with the jiffy pop aluminum cap, bright red lipstick, and my round moon face, swollen and puffy from the i.v. fluids. I was oblivious to all that. I was euphoric! I was just so happy to be alive, happy to be back with my family and friend, happy to have this leg of the journey behind me, and happy to be on a maternity ward without having had gone through childbirth again!

The recovery room nurse advised Charlene, my night shift nurse, of the pain meds that had already been administered to which I responded, "and I am still waiting for something that actually works." (I was really, really nice about it though, of course.) Charlene advised me that I would have to wait until midnight before I could have anything else. Thought bubble: Hmmm.... wonder if they will let me go back to the recovery room for that dose I just passed on....

Tthe doctors and nurses must have honored the request to advise my subconscious that I would wake up feeling hungry because I was in the mood for food (or it could have been the fact I hadn't eaten in nearly 24 hours.) Dr. H hadn't left instructions for my diet, so Charlene called him. He said I could have clear fluids that evening and a regular diet in the morning. She managed to track down one popsicle for me which I promptly devoured. She advised me that if I didn't urinate within six to seven hours, I would need a cathether. I promptly began drinking water, juice, and ginger ale in quanitities sufficient enough to deliver the desired results. Whew! Another indignity averted.

She had also asked Dr. H about meds, and he authorized her to go ahead give me Oxycontin and Percocet. Thank you, Dr. H. I was wired and even with the medication, I couldn't fall asleep. I decided to call my friend, Ann. She had called me earlier in the day, before I had left for the hospital and was very worried about me. (She had been at the hospital when my Mom had her mastectomy, so she was having to relive the past with the next generation too.) I wanted to let her know that I was feeling great. She didn't recognize me at first because my voice was hoarse from the i.v. tube, but she was thrilled to hear from me, and her tears that night were prompted by relief, I hope, and not by worry, as the morning's tears were.

By this time, Bo was snoozing on the couch beside my hospital bed, my new pain meds still hadn't kicked in, and it was too late to call anyone else, so I resorted to the television, which less than a week before election day can be very annoying. The campaign ads were actually making my pain worse. The room was wired for e-mail and internet access, and I considered updating the blog, but the B on my keyboard was stuck, and I couldn't gain entry to the website.

Sometime after midnight, the pain fianlly eased up and I was starting to drift off to sleep when the nightly routine of hourly vital sign readings and other sure-fire slumber prevention techniques were employed. The morning was no better. First there was the shift change at 7:00 a.m. and three new nurses or aids to meet, and Anna, the nurse practicioner came by, once with Dr. H and twice without. Then Donna, the other nurse practicioner came by, breakfast was delivered and retrieved, the home health care advisor came by, followed by the actual home health care rep, and the cleaning lady.

Dr. H offered to let me stay in the hospital another night, and I appreciated this offer, but I decided I would take my chances at home where I only had to contend with three rambuctious boys. (Seriously, how does anyone heal in a hospital between the lack of sleep and the quality of the food??) Dr. H said he wanted to make sure I could keep food down and that I was able to get up and walk around before he would release me. He asked me to stick around until after lunch to see how I was feeling.

Dr. H told me that the surgery went well and that everything looked normal. He said it would be five to seven days before the pathology results would be back and that these results would tell us is if we needed to do radiation. He said that even though he had been advising radiation from the beginning, we would make that decision upon learning the results. I am not sure if he saw something (or didn't see something) that made him reconsider the need for radiation, but Bo said Dr. H had mentioned the same thing to him the night before. I had been planning on radiation, and I really want to do everything I can to ensure the best long-term outcome, so I am fine if radiation is the next step.

I ate lunch and then got up and walked around. I started feeling a little dizzy and nauseated, so I laid back down and was miraculously able to get in 1 and 1/2 hours of uninterrupted nap time. I tried walking around again and felt much better this time. My goal was to get back home to greet Cole and Clay at the bus stop, and we made it just in time. We actually followed the bus into the neighborhood, and I hopped out of the car so I could hug them as they stepped off the bus.

To be continued....

Boob Voyage

The hospital called yesterday to let me know that my surgery was scheduled for 2:25 p.m. today. I wasn't thrilled with this time for three reasons. First, you can't eat or drink anything after midnight regardless of the time of your surgery. (I don't quite understand why this same rule applies to someone having surgery at 8:00 a.m. and someone having surgery at 2:25 p.m., but it doesn't bother me enough to take on the medical community to have it changed.) Second, it means I get to sit around for most of the day contemplating my fate. Third, I am probably Dr. H's last surgery of the day, so he won't be fresh, but as my friend, Heather, pointed out, I am also not the first surgery of the day when he is getting warmed up.

I had my pre-op visit last Thursday. At this time, Dr. H, and Donna, the nurse practicioner, did a pre-surgical physical. We also talked about the "procedure." I am having a modified radical mastectomy on the right side (the side with the cancer) and a total mastectomy on the left side. The terms are a little misleading as a total mastectomy sounds more extreme to me. Actually, the modified radical mastectomy will result in the removal of the entire breast and will involve an axillary dissection in which two of three levels of lymph nodes are also removed. The total mastectomy is "just" removal of the breast. Dr. H said the surgery will last about 2 1/2 hours.

He also felt compelled to remind me that it wasn't necessary to remove both breasts at this time and that many women wait to see how they do with the first mastectomy. Also, the likelihood of a recurrence is greatest in the first two years and after that time, the risk would not be as high for getting cancer on the left side. I told him I still wanted to proceed with both. Later on that day though, I did briefly revisit this decision in my mind. I still arrived at the same conclusion. From the first moment I learned I had breast cancer, I wanted to have them both removed - that same day actually! I obviously have had time to develop a more rational thought process that is also supported by data as well as intuition.

It is truly hard to know what I would have done, but the fact of the matter is that if I had known what I know now about my risk, the lack of reliable early detection mechanisms for me, and more about the disease itself, I may have opted for prophylactic removal of both breasts. Now I am armed with that information, so why wouldn't I opt for prophylactic removal of the left one? This way I will never face a day when I hear that the lump I just found in my left breast is cancer, and I will never have to wonder why I didn't have the breast removed when I could have it done it on my terms.

I will be in the hospital for one night. If I were having a single mastectomy, there is a good chance the surgery would be outpatient, also known as a drive through mastectomy. Advocacy groups are trying to require insurance companies to provide more comprehensive coverage. I wouldn't want to be in the hospital more than one night, but I am glad that I am not being released today after what I consider pretty major surgery.

I have spent a lot of time in front of the mirror these past few days gazing at my breasts. As a 34B, I always thought they were a bit on the small side, so I enhanced them with padded push up bras. I never flaunted my cleavage, but I realize now that I actually have some pretty decent cleavage going on. Actually, when you consider my petite frame, they are just right. (I think I am experiencing the "You never appreciate what you have until it is gone" syndrome.) Nonetheless, in purely biological terms they have served their utilitarian purpose - attracted a mate and nourished my children. Now they are ornamental and errogenous, and I do have other ornaments and other errogenous zones.

I have lived the last the fews days thinking of "lasts". My 20th year Willam and Mary reunion was this past weekend. As Bo and I were on the dance floor, I told him that he was dancing with my breasts for the last time. On a Busch Gardens rollercoaster last week with the safety bar firmly up against my chest, I couldn't help thinking, "This is the last time I will ride Big Bad Wolf with my breasts." Last night was my last time trick or treating with breasts. You get the drift... Since having breasts is a prerequisite for none of those activities, I believe these thoughts are just part of the mourning process for me.

Instead of sending the kids off to the bus this morning, I dropped them off at school, at their request. Clay wanted me to walk him to his classroom and Cole took off with his friends before I could embarrass him with hugs and kisses and motherly proclamations of love. I have talked to them several times over the last few days about what is happening today. In fact, when I asked the kids last night what I would be coming home without, Clay said "Cancer." Great answer! I was thinking breasts, but leave it to him to get right to heart of the matter and remind me of what is really going on today.

Am I scared? Well, I guess I am a little nervous about having surgery in general and being put under. Also, like most people, I am not really into pain. Otherwise, I am just very anxious to get it over with. I have had five months to think about it. I have had five months of living with the knowledge that there is a tumor in my breast and obsessing about what it is doing in there. When I wake up later on today, I will be cancer free. Bo, my Dad, and Bryan will be able to remove their pink bracelets.

Am I scared? I am reconsidering my answer because Bo just asked me if I had a living will. Now why did he have to go and ask me that? Actually, I was thinking the same thing yesterday, and I do have the paperwork, so I am going to go ahead and sign it this morning. But no, I am still not scared. There are some things out of my control, and I am not going to waste time worrying about them. Besides I know I will be fine and all of my family and friends have been telling me the same thing. We can't all be wrong.

My brother, Jeff, flew into town to assist this week. He, my Dad, and Bo will be at the hospital with me. My friends, Jodie and Betty will also be there. Mama (my mother-in-law) and Laura (my future step-mother) will watch the boys. I hope to be able to talk to Cole, Clay, and Lance from the hospital tonight. I have my bag ready to go, and the lipstick is packed.

I want to thank everyone who is been calling to wish me well and for all of the cards and gifts. I greatly appreciate your thoughts and prayers and your love and concern. You are all very special to me.

It is a spectacular fall day - clear blue skies, mild temperature, beautiful foilage. Jeff, Bo, Lance and I are going to go for a short walk and enjoy this incredible day.