My Most Personal Change Management Engagement: The Challenge of IBC Sandra Lynn Savin, MA Thirteen years ago, I was a consultant in the field of organization developmentdthe management of transformational change. In this role, I provided guidance and support to executive teams grappling with such daunting business challenges as the explosive revolution in technology; a volatile, unpredictable economic environment; changing consumer demand; contentious mergers and acquisitions; confusing deregulation and re-regulation; and sweeping organizational restructuring. Leading others through massive, unnerving change was my strength and passion. However, nothing in my advanced education or career spanning more than 25 years had prepared me for the overwhelming change that was about to be thrust upon me. At that time, on Monday mornings I would be on a plane from my suburban Atlanta home to a major engagement with a global corporation in New York. I would reverse my path late on Thursday night or Friday afternoon. The days were long, and the evenings were generally spent working or, less frequently, engaging in some relaxing activity. My journey into Cancerland began on one of those rare relaxing evenings when I found myself in a lingerie shop fitting room trying on red lace bras. It was early February 2001, and I had the whimsical thought that a first-ever red lace bra might be appropriate for Valentine’s Day, which is coincidentally my husband’s birthday. As I removed 1 of the bras, I glanced in the fulllength mirror and saw that a large area around the areola of my left breast was red. What on earth was in that red bra? I cautiously examined both the bra and my breast, anddto my horrordthe realization gradually set in that the redness was coming not from the bra but from within my breast. Without realizing it, I had just fallen down the rabbit hole into Cancerland, and my life from that moment would be forever changed. The journey had begun without a moment’s warning. The redness persisted for days, but I reasoned that it was nothing significant. An initial frantic self-examination had revealed no lumps in the affected breast. Moreover, my most recent annual mammogram had been normal. Whatever this redness might signify, surely it couldn’t be anything to worry aboutdlikely no more than an allergic reaction to detergent or chafing from the fabric in the bra I had been wearing regularly. I did schedule an appointment to have the affected breast examined when I returned home, but to accommodate my travel, 2 weeks would pass before I could get in to see my pri-
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mary care provider. Meanwhile, I continued to feel around for nonexistent lumps. I also noted no particular pain, just occasional itching. Yes, this is most likely an allergic reaction to something. So I went on with my usual schedule with no major concern. During my eventual appointment with my primary care provider, he scrutinized my breast and did a thorough examination for lumps. When he, too, felt none, I was greatly relieved. I remember saying, “Thank God, it’s not cancer!” His face was expressionless as he told me he was referring me to a breast center for further examination. The referral made sense but caused no particular additional concern. I reasoned, No lump, no cancer. Again, owing to my travel schedule, another 10 days would pass before I could return for the appointment at the breast center. Meanwhile, I had no idea of the ticking time bomb within me. When I saw the breast surgeon, she ordered a new mammogram that also revealed no lumps but did show a thickening of the skin. Additionally, there were 2 swollen lymph nodes alongside my breast. However, I had been fighting chronic bronchitis for 2 months, so I assumed the swollen nodes were related to the respiratory infection. With these findings, the surgeon decided to schedule an ultrasoundguided core needle biopsy. I’d previously had several fineneedle aspirations for cysts that proved to be benign, so I still was not alarmed and adjusted my business schedule to accommodate the biopsy. Several days after this early March biopsydnow a month after I first noted the rednessdthe results were back: Negative for malignancy. What a relief! However, the surgeon’s next words drove a chill down my spine: “I’m still concerned about your symptoms and would like you to return for a stereotactic mammography-guided core needle biopsy for more samples to rule out inflammatory breast cancer (IBC).” I barely managed to ask, “What did you say?” She repeated her statement, adding, “And stay off the Internet.” That admonition produced equal horror. What bad news would I uncover on the Internet? To accommodate my travel schedule, almost a month would pass before I could get back for that second biopsy. Meanwhiledagainst the surgeon’s advicedI used my wellhoned consulting skills to search out everything I could find about this unknown “IBC.” I quickly learned why I was warned to stay off the Internet. The more I learned, the more frightened I became. This was a rare, aggressive, advanced form of cancer with a poor prognosis. Please, God, don’t let it be IBC! The stereotactic biopsy was finally performed, and several days laterdnow 2 months after my initial discoverydI heard arguably the most dreaded words in the English language, “You have cancer.” Moreover, it was confirmed that it was,
indeed, IBC. Much precious time had been wasted because of my ignorance about the gravity of my situation, the apparent lack of urgency on the part of the doctors for me to move forward quickly with the testing, and my own driven sense of obligation to my clients rather than my own well-being. Now that I finally understood my condition, I realized that I was embarking on the most important consulting engagement of my life, as both the client and the change management consultant: The Cancer Project. Approaching this project objectively would require that I switch off all my initial feelings of shock, disbelief, grief, sadness, and fear and the overwhelming sense of being out of control. I would have to shift to full research mode and decipher the appropriate strategy if I were to have any chance of surviving this devastating change in my life. There was no room for emotion. My energy had to be focused on learning all I could and finding out how to team up with some of the world’s preeminent medical providers to eliminate this terrorist who had invaded my body. After an initial consultation with an Atlanta-based medical oncologist to whom the breast surgeon referred me, I concluded from my frantic Internet research that best-inclass MD Anderson Cancer Center, with its extensive expertise and experience with IBC, offered the best hope to beat the dire statistics. This was my most critical decision point. My introduction to MD Andersondby now well into Aprildwould begin with the usual round of testing to stage my cancer (I was just beginning to accustom myself to saying “my cancer”) and determine a treatment plan. In consulting terms, this would formulate my Current Conditions Report and Strategic Plan. I checked into Rotary House (the on-site patient hotel at MD Anderson) the night before my scheduled appointments and was very pleasantly surprised to find how much it resembled the upscale hotels in which I was accustomed to spending my weeks, rather than a sterile hospital environment. I received a reassuring pamphlet, “We’re Here for You,” and a detailed itinerary for my testingda reassuring sign that my consulting resources were under control. How very much I needed for things to be under control! That evening I went to the Rotary House library and browsed many books about cancer, desperately searching for something that might prove helpful. I wasn’t disappointed. I garnered my first significant nugget from an older book on a shelf: Cancer cells are weak and disorganized. Up to this point, I had pictured cancer as some overwhelmingly powerful force that could kill me at a whim. How was I ever going to conquer it? The key was in that simple sentence, Cancer cells are weak and disorganized. If I could think of my cancer on the cellular level rather than as a massive, potent killer, then I could cope with it.
After all, I was strong and organized. I could simply grapple with it 1 cell at a time. What a revelation! If oncologists were to get this 1 point across to patients at the beginning of their treatment, what a difference it could make in the patient’s thinkingdI can do this, 1 cell at a time. I went through what felt like an endless round of testing the following days, amazed by the caring presence of all those with whom I came in contact. I had imagined that a center devoted exclusively to cancer would be all doomand-gloom but instead found a place filled with hope, support, and compassion. This, too, had a significant effect on my thinking. I wasn’t merely patient #475877. I was an individual who was treated with personal concern and attentiveness. I had, in fact, chosen the perfect place as my consulting partner. No project can be successful without the right team. After the testing came my first appointment with my medical oncologist to discuss the test results and an appropriate treatment plan. I had steeled myself for a grim meeting concluding with, “We regret there is not much we can do for you.” Instead, I learned that I had stage IIIb disease, which was encouraging news. The cancer had not spread beyond the locoregional area. I was further heartened by the fact that the oncologist was a warm, caring, passionate woman who was as eager as I was to fight the cancer against the odds. Her demeanor and attitude had an immeasurable impact on me. I came to realize how readily patients pick up on doctors’ signals. How doctors communicate and behave and how they demonstrate their attentiveness and willingness to become an ally in the patient’s fight can give her the strength and confidence to continue in the face of a poor prognosis. Conversely, any hesitation or doubt can lead the patient to conclude that there is no hope. I was placed on a curative track with the hopes of achieving no evidence of disease (NED) prior to surgery, which would be modified radical mastectomy (MRM) after 6 rounds of doxorubicin and docetaxel administered simultaneously beginning in early May. We decided together that I would receive my infusions under the care of the local oncologist back in Atlanta, with direction from MD Anderson, so that I would not have to fly back and forth to Houston every 3 weeks. Starting the chemo would mark the first major milestone in The Cancer Projectda full 3 months after noting my first symptom. Please, God, don’t let this delay prove fatal. My next appointment was with the surgeon who would perform the MRM. I thought it was critical that my surgeon be experienced with IBC, one of my obvious reasons for choosing MD Anderson. The surgeon had a calm and confident manner and gave me further encouragement for a positive outcome. We scheduled the surgery for mid-August at MD Anderson. Now I had another milestone to aim for: complete the first 6 rounds of chemo, then proceed to the next
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phase, surgery. The fact that the surgeon spoke confidently that I would make it that far was a positive signal at a time when I was grasping for good news. I found that although the prospect of completing any major undertaking is sometimes overwhelming, getting through to the next few weeks or months is achievable. Establishing these interim milestones offered hope that would I could get there step by step. I had used that very technique with my clients. Next, it was time to consult with a radiation oncologist. I would likely undergo another 4 rounds of chemo after my initial recovery from MRM. I would then move on to radiation therapy. Initially, I was dismayed at learning that radiation would be administered twice a day, especially anticipating (and underestimating) how much I would have endured up to that point. But given the statistics on the improved outcomes for that protocol, I grudgingly accepted that recommendation. I was assured that radiation therapy would not be painful and that patients generally considered it the easiest part of the journey. Although in the end this did not hold true for me, the hope for an “easy landing” was more encouraging news at the time. Please, God, get me through this! Finally, it was time to fly back to Atlanta and begin the chemotherapy infusions. Since I had decided to approach my cancer on the cellular level, I asked for information on how both doxorubicin and docetaxel worked on individual cells. I could then visualize this process during and after the infusions with the intention of a positive result, which helped me personally engage in the healing process. My belief is that my personal involvement, along with my world-class treatment, has enabled me to continue to have NED 13 years after my diagnosis. Another visualization I employed involved the red doxorubicin. I was told to expect my urine to turn red as the chemo cycled through my system, and red it was! As I viewed it for the first time in the toilet, my thoughts raced. There must be a lot of dead cancer cells cycling out with all that red stuff. I joyfully flushed the cells away. Flushing cells away became a ritual I looked forward to. Flush, flush, flush. Gone, gone, gone. Each day I was envisioning more and more cells leaving my bodydcell by cell, I was becoming cancer-free. In mid-July, I returned to MD Anderson for my presurgical checkup. An incredible surprise awaited me: they could find no evidence of cancer! The lymph nodes that had been identified as malignant in April had resolved and turned to fatty tissue. The mammogram and ultrasound showed NED. We were now ready to move on to surgery in mid-August, after I had completed one more round of chemotherapy back in Atlanta. The Cancer Project was on track, and the results to date exceeded my expectations. It was time to cel-
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ebrate the work of the consultant, the client, and, in no small measure, my phenomenal medical team! August came quickly, and I was back at MD Anderson. All the tissue of my left breast was removed along with 20 lymph nodes. Unfortunately, I came out of the anesthesia feeling like I had a porcupine under my left arm. There had been nerve damage, likely attributable to the axillary node dissection, resulting in a considerable amount of pain. Additionally, I had problems with my drains and seroma accumulation that required needle extractions several times back in Atlanta. However, there was the best of all possible news with the pathology report: I had a complete pathologic response to the chemotherapy. The breast tissue and all 20 lymph nodes were clear. We had actually managed to purge all those cancer cellsdwhat an incredible victory! And more good news followed. I would need only 2 more rounds of postoperative chemo rather than 4 prior to beginning radiation therapy. This meant that the completion of The Cancer Project would be moved up 6 weeks! The last 2 rounds of chemo were uneventful, although the pain from the surgery persisted. I was told that it could take 6-18 months to resolve, if ever. Unfortunately, I would come to find that this was a permanent condition. Eventually, I would require several multiregional intercostal and peripheral nerve ablations to bring relief. By the end of October, a few days after my 61st birthday, once again I returned to MD Anderson, this time for 6 weeks. It was time for radiation therapy to the lymph node drainage areas and chest wall to reduce the chance of local recurrence. I completed the preradiation simulation and began the twicea-day ritual of driving to MD Anderson from our rented apartment. I was given radiation therapy to the left chest wall, infraclavicular region, supraclavicular fossa, and axillary apex and internal mammary chain. Radiation boosts were administered to some areas, and the skin was bolused for a period of time. In short, it was a very aggressive regimen. During every treatment, I would envision the radiation as healing energy and light and whisper, Thank you for the healing energy. Thank you for the healing light. However, the radiation eventually induced painful, brisk erythema, moist desquamation, and some blister formation. Just before Thanksgiving, the cumulative effects of the various treatments over many months, along with these new symptoms, led me to an unexpected meltdown. I showed up for a scheduled treatment and declared, “I quit!” The accumulated stress of the year, the unresolved nerve pain from the surgery that had been aggravated by the radiation, and the breakdown of the skin had become just too much. I could no longer go on. I was told that the radiation therapy
was my million-dollar insurance policy against recurrence, but at this point I didn’t care. Where had the upbeat battler gone? To my surprise, the radiation oncologist would not allow me to quit. What do you mean, I can’t quit? We had a rather intense verbal volley, after which he summoned a social worker to reason with me. I was beyond reason. However, she was finally able to lead me to a psychiatrist who promised medication and counseling to get me through this final, critical stage. Their strategy worked. I completed the course of
radiation therapy and with great vigor “rang out” in early December, precisely 10 months from that evening in the lingerie shop fitting room when I first entered Cancerland. By the way, I did buy that red lace bra, and I still have it as a reminder of this incredible journey. And although The Cancer Project officially ended successfully in December 2001, my gratitude and prayers remain forever with all those incredible doctors who encouraged medeven to the point of proddingdand who, with their dedication and expertise, made it possible for me to write this today.
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