Sunday, October 31, 2004
My immune system will continue to be susceptible to viruses and infections for up to two years, so I must remain vigilant about what and where I eat, handwashing, and in general, use common sense regarding my health. I will not get a flu vaccine (I haven't in past years either but that's because I didn't want to) because my new immune system cannot handle it at this point, so during the cold and flu season I must take extra precautions. Although my doctors cannot declare me cured until year five, I feel very positive about the future and am making plans.
I feel incredibly blessed because I feel so well and am able to focus on my future so soon after being diagnosed with cancer. I hear many stories of leukemia patients going through years of chemotherapy. I can't imagine. I suppose they are either not good candidates for transplant (not everyone is) or a donor cannot be found. Logistically, everything fell into place for me, and my doctors were aggressive in my treatment, which is what I wanted.
I'm spending MUCH time with my nephews—they're so adorable! Being around these little fellas has done me a world of good—they keep me active and silly. I will be taking somewhat of a break from them in the next couple of months as I venture to the Midwest—Ohio in November and Indiana in December. Then after the New Year it's time to get on with life!
The Power of Love (A Tribute)—
Depending on Family
I don’t know what I’d do without my family. My family is very important to me, and I’ve come to realize how much I want a family of my own some day. My parents, my sisters and their husbands are all so caring. They have tended to my health and emotional needs quite well these past ten months. Family is there for you no matter what—at least my family is and always has been.
I’ve never been very good at asking for help. Fortunately for me, my friends called on me. From the moment they found out I was diagnosed with leukemia, I was receiving phone calls, e-mail messages, letters, cards, etc. I never realized how many people cared about me. It was very eye-opening and humbling. My friend, Robin, wrote to me and said, “Some people never know how much they are loved and cherished, but the gods have elected for you to know.”
Lynn
I first met Lynn on a kindergarten field trip; we sat next to each other on the bus. I didn’t know her because she was in the afternoon class and I was in the morning one. I recall she had a cold sore on her little mouth and apparently I asked her what it was. I don’t recall asking her that but she says I did.
Karen B (EuroK is her alter-ego that she discovered during her European sabbatical the summer of 2001)
Karen B and I met at a party the summer of 2000, and it only took twenty minutes of talking to this woman to know that she would become a dear friend. We had an immediate connection.
Cindy
Cindy is my cousin, but she is much more than a cousin. She and I were in the same grade throughout primary and secondary school, and we ran with the same group of people. So not only are we cousins, we’re great friends. When she and her family moved to Lebanon, Ohio, I was overjoyed (I was already living in Cincinnati; Lebanon is about 28 miles north of downtown Cincinnati). I made many trips up I-71 to visit them. I’d spend the entire day at their home, playing with Jake and Megan, eating, drinking, and laughing. Cindy and John are so much fun and I love them and their children.
Nelson & Beckie
Nelson and Beckie just fit together. They are a beautiful couple and their relationship gives me hope for my own romantic possibilities. Nelson started out as an acquaintance. I met him in 1996 through his ex-girlfriend when she was my assistant director in Talley’s Folly, in which I played the role of Sally Talley. I did not become friends with him until I started hanging out with Karen B because they both worked at Procter & Gamble and were good friends. Eventually, he not only became one of my dearest friends, but also a fabulous dance partner! This Latino man has quite the moves when it comes to salsa, meringue, cha-cha, and rumba.
Natalie
Natalie and I met the winter of 1994 when she came to see Ten Little Indians, a community theatre production that a couple good friends of hers were in with me. This was my debut performance in Cincinnati. However, we didn’t really become close friends until a couple of years later when we started hanging out together and realized how much we had in common. She is someone with whom I can have an interesting conversation about spirituality. Both she and I have dealt with serious losses the past couple of years and that’s strengthened our bond. She lost her father the summer of 2003 and I lost my health December of that same year. Unfortunately, I was not there for her the way she has been here for me. I called, e-mailed, and checked up on her and she did all those things for me, but she actually made the trip out to see me and help transport me to clinic visits. She showed up with two Cincinnati favorites—several flavors of Graeter’s ice cream and Skyline Chili—for which she scored major points with Dan.
Lisa
I met Lisa in 1995 when I directed her in The Diary of Anne Frank. She portrayed Mrs. Frank with grace and strength. What a performance! As her director I was so proud. Needless to say, she and I became best of friends very quickly. She went on to direct me as the Witch in Into the Woods, I directed her again in The Nerd, and both of us were two of the five founding members of Ovation Theatre Company in Cincinnati. We’ve definitely been through a lot together when it comes to theater, but we’ve also been through much together personally. I had the honor of being a bridesmaid in her wedding on November 13, 1999. Lisa is still one of the people running Ovation, which will be going into its sixth season.
Susan
Katie is another friend who visited me to help around the house and transport me to the hospital. This was all the more kind because she was three to four months pregnant and had left husband, Kevin, in Alexandria to fend for himself, while she stayed with me in New Jersey.
Dan G
My friend, Scott, one of the founding members of Ovation, hooked me up with Dan over e-mail before I moved to the northeast. Dan and I e-mailed each other for months (he’s a very busy man) before we actually met. One Friday night I went to Chelsea and met him at Food Bar. In no time we were talking about everything. No topic was off limits and at times it got a little racy. It was fun! I couldn’t believe how quickly we opened up to each other. The next day I received an e-mail message from him declaring, “Oh, my God, you’re my new best friend!” I’ll never forget it. I told him I felt the same way.
Maria
I’ve known Maria since first grade. She, Lynn, and I were in the same class. Maria and I shared lockers all four years of high school and were college roommates all but one semester, so we have been close friends almost our entire lives. Maria lives in Chicago with husband, Aaron, and their three adorable children, Olivia, Eliza, and Nathan. I don’t get to see Maria often nor do we talk on the phone or e-mail that much, but when we are together, it’s as if no time has passed.
Additional acts of kindness
There are so many kind gestures people have bestowed upon me and it is difficult to include them all here. However, there are some additional ideas I feel are worth mentioning because I found them to be clever, useful, and/or surprising.
Monday, August 16, 2004
2004 was supposed to be the year I started making important connections in the entertainment industry and moving my acting career forward—at least that was how I had configured it in my business plan. However, other plans were being laid and I was sent on a detour by leukemia.
Since December 18, 2003, I have been jumping hurdles to get my life back on track—some hurdles have been easier than others. The first major hurdle was coming to terms with having cancer. Who is ever ready to hear that word? I never in my life thought the word “cancer” would be associated with me. Not Deborah Ludwig—I’ve always been so active and tried to be healthy. Though if I’m honest with myself, I have indulged in unhealthy behaviors over the past fifteen years—not excessively but perhaps enough to affect my health. Mainly this was smoking cigarettes on occasion, drinking more than I should, and eating junk food. But that’s in the past. I can’t change it, I can only move forward and make positive changes in my lifestyle—and stop thinking that I’m invincible. Our bodies do have limitations.
I spent a month or so getting used to the idea that I had a potentially terminal illness to deal with, which forced me to face my own mortality. None of us are guaranteed tomorrow, but when you know you have a disease like cancer, you are much more aware of your impending mortality—it’s right there in your face. I knew that I was not ready to leave this world—too young, too much to accomplish, and I didn’t want everyone to go on living without me. I became determined to do what I had to do in order to help the medical professionals fight my illness. I fastidiously wrote in my journal, took up meditation, listened to affirmation tapes, prayed, and used all the well-wishes from family and friends to boost my spirit. All this seems to have worked—especially seeing me through chemotherapy.
Chemotherapy was the second hurdle. I was terrified of it at first because of all the dreadful side effects one hears associated with the treatment. However, I was lucky. For some reason, I experienced minimal side effects and my recovery period after each treatment progressively hastened—from a week and half after the first one to only a couple of days after round four. From December to March I was getting stronger. My chemotherapy was extremely aggressive. I was in the hospital each time for 4 – 5 day stints with almost non-stop infusions of chemo being pumped into my system. I am still amazed that such a small body could handle that much poison and not completely destruct.
It was no joy ride being in the hospital for those treatments, but I always had my computer with me so that I could write about my experience as it was happening. At my bedside, too, was my rosary (it always gives me a sense of protection), and my inspiration cards to motivate me. I also became acquainted with each of my roommates. We would talk, share our stories, and reveal our hopes and fears—these interactions were very helpful. These women are all fighters—Jacqueline, a 24-year old woman with breast cancer; Karen ABL, a lymphoma patient who has become someone I will call a friend—we clicked immediately—she’s a year older than me, married with two little girls; and Elsie, an 84 year old leukemia patient. I have learned so much from these women as well as other transplant patients I’ve met during my out-patient clinic visits. It’s beautiful the strength and fighting spirit cancer patients possess—I observe it every time I go to the hospital or clinic.
Chemotherapy wasn’t a cakewalk, but it wasn’t as bad as I thought it would be either. The next hurdle was preparing for transplant, which for me was scarier than chemotherapy. I had read all the literature my doctors gave me, and of course, that information included all the side effects and suggested lifestyle changes afterwards (low-microbial diet, staying away from crowds, ingesting numerous pills on a daily basis, etc.)—it all seemed daunting and terrifying. Then a miracle happened in April: my doctor’s office called and informed me that Barbara was a tissue match! Each sibling has only a 25% chance of being a match, and having only two sisters to test as potential donors did not leave me with great odds for an HLA match. However, Barbara was not only a match, but a perfect one—I couldn’t ask for more. Now I had to get my mindset wrapped around a bone marrow transplant. I’d decided back in December that transplant was the solution for long-term survival and a cure, but now that it was becoming a reality, I was scared. What if my body rejected Barb’s stem cells or her stem cells rejected my body? Would I die? I was trying to have faith, but I couldn’t squelch the thoughts of death. I finally decided whatever happened would happen and I had no control over it—all I could do was hope that God’s plans for me on this earth weren’t completed.
The next hurdle, once I had checked into the hospital May 24th, was getting through four days of Total Body Irradiation (TBI) before the transplant could take place. The goal of TBI is to totally suppress the immune system so that the donor stem cells will not reject the body. TBI involved the following:
The TBI was painless but the set up was quite an ordeal. I was placed on a stretcher in a sitting position. Foam triangle supports were placed beneath my knees so that my legs were bent, feet flat on the stretcher. Then my feet had to be spread a certain width (based on measurements previously taken by a physicist). There can be no space between areas of your body so that the radiation is evenly distributed, so to close the spaces, they basically place sandbag-like devices (rice bags, actually) between the feet and legs. All of this gets taped down to prevent body movement.
Then the radiologists place bagged supports behind each arm and taped my torso to the board against which I was leaning on the stretcher. A piece was put behind my head and then tape was secured from one side of the stretcher over the chin and attached at the other side of the stretcher, totally restricting any movement. I told one of the technicians after I was strapped down, “This could be employed as a subtle form of torture.” She laughed. Then they turn off the light and used an infrared laser beam, positioned above the stretcher, to line up the center of my body. Once alignment was achieved, a large glass panel was pulled in front of me, the radiologists left the room, and radiation began. Twice a day I received fifteen minutes of radiation on each side of my body. So, in total I was exposed to four hours of radiation—no wonder I felt so bad by the end of the week. Radiation hit me much harder than chemotherapy ever did, but I survived the TBI.
TBI was followed by two days of chemotherapy and then June 1st arrived—Day zero—my "new birthday" as my friend, Lynn, referred to it. I have to admit it was rather emotional for me losing my stem cells and their ability to make my O negative blood. Going forward I will possess Barbara’s stem cells, and my blood will eventually change to O positive, her blood type. It was equally emotional to think that my sister was giving me a second chance at life. I love her for it because it was especially difficult for her due to her pregnancy, but she did it for me anyway. The doctor had to extract bone marrow from her back pelvic area, and he had to go in with a needle seventy plus times to get enough marrow. This was no easy ordeal for a woman six months pregnant! The doctor was very pleased, though, because she had “good stem cell concentration.” The stem cells were collected and the transplant took place June 1st.
I have had so much support throughout this whole process. My sister, Karen, and friend, Karen B, were with me during the bone marrow transplant, which was merely a blood transfusion that took about twenty minutes. The only discomfort I experienced during the transfusion was an intense scratchiness in my throat. The doctor said the scratchiness was caused by the preservatives used to store the bone marrow—it had been over a week since Barbara had undergone the bone marrow extraction. Afterwards, I was very sleepy, due to the drug they had given me prior to the bone marrow transfusion. Both Karens stayed in my room, watching the monitor as my blood pressure rose and fell over the next several hours—sometimes getting higher than my sister felt was safe, but the nurses assured her it was normal and that the staff were watching me very closely.
The first week after transplant wasn’t too painful or uncomfortable, but the following week was difficult. I was given morphine for pain and had few lucid moments. One day was particularly filled with delusions – hearing voices of family and friends who weren’t there and even seeing people in a different dimension—they weren’t in my room but I could see them from my room, in a different place, and yet I couldn’t reach them—I was extremely frustrated. Once I even left the transplant unit (I can’t believe no one saw me because of course I had to take my I-V pole with me) to see if my family was in the “family room” down the hall (outside of the sterile environment of the transplant unit). No family members were there—I was merely hallucinating. I was a handful for the nurses to deal with that day! I was much better the following day, and I knew I had been in a bad way because everyone who came into my room exclaimed, “You look much better today!”
I had a dream during that time period that is significant. It was one of those dreams that goes on forever—you wake up and then go back to sleep, and it continues this pattern over and over. This went on for at least 24 hours. The dream is still quite vivid in my mind, two months after transplant. The dream began the Friday evening that Susan, a Reiki practitioner, came into my room to do some energy work on me. I felt myself drifting off to sleep and into dreamland almost immediately. I was floating, in my hospital bed, down a white, porcelain tunnel and the speed at which I was descending kept increasing. At first I was scared, but then the fear subsided as I knew I was in no danger. Somehow I knew that I was safe. The same calm stayed with me when it appeared that I was going to hit a solid surface, such as a wall, but my bed floated smoothly through all obstructions, keeping me from harm.
I recall the peacefulness of the places I was exploring and then how this serenity would explode into chaos and violence, which I had to squelch from the confines of my hospital bed. I never once moved from my bed as I fought off evil forces and explored various places. Menacing people were chasing me and I had to eliminate them. Johnny Depp even showed up in my dream, and he was quite impressed with how I handled adversity. (I don’t know why he was in my dream—I have never dreamt about him before, but he sure is adorable!)
Anyway, near the end of my dream, I was floating down this dark tunnel with several other people in beds in front of mine and I could hear men shouting, “Hurry up, the doors are about to close, the doors are closing!” Right as my bed was at the iron-gate, the door closed, shooting me back up into the daylight. At this point, I woke up. I had had a vision! This dream was God telling me that it was not my time to leave this earth. I have too many things to do yet. For the first time in weeks I felt calm and reassured that all would be well.
I spent twenty-five days in the hospital. Twenty-five days is a long time to be cooped up in a small room looking at the side of a brick building. I was fortunate that I received cards and gifts, phone calls, and visitors almost on a daily basis. The two days I had no visitors was excruciatingly lonely and long. At that point, I felt so ill and weak that I didn’t feel like typing my journal entries, or reading, or anything. I just laid there watching television. From June 1st to the 5th my sister, Karen, was by my bedside. Karen B was with me transplant day and then returned to New Jersey June 6th through the 12th to keep me company. Both of these women gave so much of their time to me. Barbara visited as often as she could and did laundry for me so that I would have my own clothes to wear. I refuse to wear the hospital garb because my own clothing makes me feel like a non-sick person. I had to have some control of my situation, and one thing I could control was my wardrobe.
Tuesday June 16th a huge surprise awaited me. Karen B had told me that I would be getting visitors that day and I kept wondering who from Cincinnati would be popping in. About 4:00PM that afternoon there was a soft knock on my door. I looked over and started crying—it was Maria and Kimberly. I had no idea they were coming. I hadn’t seen Kimberly in at least three or four years, and almost that long for Maria, but I’d at least been in touch with her. We all hugged and cried and it was so wonderful—it was like old times in college—the three of us talking non-stop and sharing the vicissitudes of our lives. They both brought me beautiful gifts—books, paints, CD’s, and other inspirational items. Kimberly started crying and she held my hand, “I’m sorry that I’ve not been in touch. I’ve been such a terrible friend.”
I smiled and squeezed her hand, “It doesn’t matter; you’re here now.” We all deal with tragic or uncomfortable situations differently. Some people can reach out easier than others and some people are afraid they’ll say the wrong thing, so they say and do nothing. That doesn’t mean they don’t care. I used to be that way to an extent, but no more. These days I feel the need to reach out to people who are suffering or who need encouragement.
Maria and Kimberly stayed until 11:00PM that evening and then returned the next day. They remained with me from 10:00 in the morning until 4:00 in the afternoon. They had to get back to Philadelphia to catch their planes back to their families in Chicago (Maria) and Louisville (Kimberly). It was so much like old times and I know they enjoyed it as well. We may be fifteen years older but those college days are still very much etched in my memory. There were many others who also made my stay at Hackensack University Medical Center bearable.
Shelley and Dan showed up before their little baby boy (Daniel Harry) was born, June 8th. They brought me a belated birthday gift—two gorgeous blouses and T-shirts from Club Monaco, a red faux crocodile belt, stationary, and 50 stamps. Nelson and Beckie visited on a regular basis, and Beckie even asserted herself by making me get out of bed and do some walking. I was annoyed at first, but I needed someone to push me, and she’s good at that. I do appreciate her efforts and know that they were for my own good. She brought me Yoga books to read, as well, because I had mentioned possibly getting certified in Yoga and teaching it. Well, we’ll see…I have done a little bit of Yoga and I am so not flexible anymore. It will take a lot of work to achieve some of the poses, and of course, to teach, one must be able to perform the poses.
And I cannot forget Lani. She filled the void when no one else would be there with me. Near the end of my hospital stay I was not eating at all—a few bites of food here and there, but nothing was appealing to me and the thought of ingesting the hospital food made me want to vomit. She was aware of this, so one day she brought macaroni and cheese for me. I actually ate a couple of paper cups of it. This was the first substantial amount of food I’d had in over a week, maybe longer. All of these people made my stay at the hospital more pleasant.
The nurses and doctors at Hackensack University Medical Center are very caring and very good at what they do. I feel so fortunate to have been in this area of the country when I got sick because I feel I have some of the best doctors at my disposal, and I will need them for several years to come. I was released from the hospital on June 19th, which was sooner than I had expected, but I was definitely ready to leave the facility. My next hurdle awaited—post-transplant recovery.
Since I’ve been home I’ve struggled with my body and my mind. As far as experiencing side effects, the major problem is fatigue. Mostly fatigue is due to my low hemoglobin levels and inability to sleep. I was taking Ambien at night but found it wasn’t really helping me—I’d sleep for a few hours, wake up, and have a dreadful time falling back to sleep. There is nothing worse than tossing and turning in the dark for hours. I am still fighting fatigue, but as my hemoglobin levels increase (it is now over 9 and12 to 15 is normal), as I start exercising and meditating more often, as the transplant date gets further away, and as I continue to heal, the tiredness will dwindle and my energy will return. I have to accept that this is a slow healing process. As Dr. Rowley told me, “I set the atomic bomb off in your body.” It has taken a while to get my motivation back and I still struggle with it—my mind saying “accomplish this” and my body refusing with an adamant “no.”
I have been visiting the clinic twice a week, but this week (week of August 1) my visits dropped to once a week. I am past 60 days post-transplant and the study drug I am on only requires a blood draw once a week now. I have received three lumbar punctures in the past three weeks and I will receive one more next week. The lumbar puncture doesn’t hurt, but it’s uncomfortable. The numbing part of it is the worst part of the procedure because it burns. Once the area of the lower spine is numb, the doctor inserts a needle into the spine—actuallt, it's in the fluid area not the spinal cord itself. The first step is to drain some spinal fluid. The doctors use this fluid to determine if there are any residual leukemia cells lingering, or have returned. After the fluid is drawn, then methotrexate (chemotherapy) is injected into the spine. The chemo will kill/prevent any cancer cells. I always feel a weird tight sensation in my upper right thigh when the methotrexate is pumped into my spine. It only hurts for a few seconds but the sensation is pretty intense. It is fascinating to me how one part of the body can affect another.
I am feeling better every day but am still in that fragile first 100 days post-transplant. I missed my class reunion August 13th and am sad about that, but I was here to take care of Aidan when Dan took Barbara to the hospital when Andrew Daniel was born at 2:27AM August 14th! I had been looking so forward to the reunion. Last summer I was excited for it and it was a year away. I told a friend of mine that one of the first thoughts I had had after I was diagnosed with leukemia other than “I’m going to die” was “I bet I won’t be able to go to my class reunion.” If it were past the 100 days and my doctors approved it, I’d definitely go. However, I must think of my health. There will be another reunion in five years and that one I intend to attend.
The future is my next big hurdle—as I suppose it is for everyone. I continue to try to be positive, and if I feel sadness or anger I allow myself to express these emotions. I don’t know what the future holds and I get scared thinking about it sometimes, so I try to remain present in the moments of each day. I know I still have a long recovery ahead of me, but I feel in my heart that I have beaten cancer, and I am ready to tackle whatever lies ahead of me with grace, compassion, and aplomb. I was talking with my friend, Bobbi, the other day when she visited, and I joked—“I watch my sisters and friends get married, I watch my sisters and friends get to have babies, and I get cancer.” I told her I had to laugh about it or I’d cry. At first I was feeling sorry for myself and thinking, 'When will it be my turn?' My path in life is different for some reason. I want to embrace and trust that path—not feel badly because of what is lacking in my life. I am thankful for and I hold dear all I do have because I have been blessed with so many gifts.
I have made decisions for myself based on what I felt was best for me at any given point in time. There have been guys with whom I could’ve gone out or started relationships but I chose not to, and the ones I did take a chance on, well, those did not work out. That’s life. I am content and happy knowing that I will never settle for someone out of loneliness, frustration, or fear of being on my own. Mr. Right will appear when the time is appropriate. Until then, there is creative work to do, volunteer work to begin, life to live, and most importantly, love to shower upon family and friends.
Friday, July 02, 2004
I am feeling good, except that I’m still very tired. My hemoglobin level remains around 8.6 and normal for me would be about 13, so I’m getting much less oxygen travelling through my system than I normally would, under healthy circumstances. I’ve been fighting some depression and I don’t know why. I should be ecstatic to be in such good shape so soon after transplant. But I feel lethargic and unmotivated. Am I tired of feeling so fatigued? Am I fed up with feeling like such a plain Jane? Am I afraid of what the future holds? Probably all of these things are weighing heavily on me. I want to recapture that positive attitude I had prior to transplant, but it seems to have disappeared. I’m sure all the drugs I’m taking and the changes going on in my body are contributing to this dour mood.
I have been forcing myself go for short walks. I try to take good care of my skin (it is so dry), and I am religious about taking my medications, of which there are about 20 per day and some of the pills are huge. I long to get well, to recover fully, and get on with life, but I’m finding the future to be scary. (Not as scary as having leukemia, but scary nonetheless.)
My mother has been here since last Tuesday and will remain with me until July 6th. Then my sister, Karen, will be here for a couple of weeks to help out. After that time, I hope my strength and spirit have returned. I’m finally having the desire to answer e-mails, write in my journal, and hopefully soon, I’ll be writing the many thank-you notes for gifts and money I've received over the past few months.
This whole healing process is long and arduous, but I knew it would be. I must have patience, take life day by day, and enjoy the present. I meditated this morning—I find that is helpful for a healthy state of mind. I must continue practicing all the mind-body tools I’ve used up to this point in time to feel well.
Monday, June 14, 2004
Well, I’ve made it to day 13 and am doing as well as can be expected. Today I am struggling with mouth pain, a sore throat, nausea, a Strep infection, an eye infection, and the inability to swallow the anti-fungal drug, which is a huge pill. There are many unpleasantries in this situation, but I am trying to deal with them with as much grace and patience as I can muster.
I managed to do some exercises with the encouragement of my physical therapist this morning—my arm exercises and walking. I’m supposed to do one more set this afternoon. Regardless of how I feel, I must force myself to do a certain amount of exercises and eat a minimal amount of food—sometimes as little as two to three bites of something—but at least it’s nutrition. My skin is extremely dry, I’ve lost all my hair again, and I have some rashes on my face. Still, in the scheme of things, I’m doing pretty well considering my new stem cells have yet to attach to my bone.
Total body irradiation definitely resulted in much harsher side effects than my previous chemotherapy sessions. I’ve experienced the gamut – vomiting, dry heaves, diarrhea, fever—absolutely no fun!
I’ve come to both love and fear morphine. Its effects are immediate so relief comes quickly, but after a while that drug combined with all the other drugs affects my mental clarity. I think I was driving the nurses a bit batty on Saturday. I kept thinking I heard family and friends, but couldn’t get to them, and so I was bugging the nurses about where my family and friends could be.
Barbara was even concerned. She stayed to talk with the doctor about this. He assured her that this is pretty common with all the medications running through my body. Sunday, I was much more lucid. Everyone who saw me said, “Oh, you look so much better today!” I laughed to myself, ‘I must’ve been a real nut job!’
My major challenge has been eating; I can only manage consuming very miniscule amounts of food. At least a few bites is better than none. Plus, it helps me to get my pills down, most of which now are being given intravenously.
The day of transplant (June 1st – Day 0) my sister, Karen, and my friend, Karen B, were both here. The transplant consisted of three blood transfusions that took all of twenty minutes. Karen stayed with me at the hospital from June 1st – June 5th. Karen B came back and stayed with me from June 6th to the 12th. She also decorated my room quite beautifully. These two women took excellent care of me during a very vulnerable time, and I’m so grateful for their efforts and attention.
I’ve received so many e-mails, cards, gifts, and phone calls from all over the country. Thank you, all you lovely people! Your love and support, as always, means the world to me.
Monday, May 24, 2004
Many friends and acquaintances have told me over the past several months that I am an inspiration to them--an inspiration in the manner in which I deal with having leukemia, my strength of conviction to overcome this illness, and the self discoveries I’ve made along the way. I admit that I enjoy hearing that I’m an inspiration, but more than me inspiring others, I’ve found family, friends, acquaintances, and even strangers have been, and are, incredible sources of inspiration for me. They motivate me to give back to society, to be generous, and to succeed in all my artistic and philanthropic endeavors.
Inspiration comes to us through many avenues--peoples’ actions, attitudes, observations. I spent my birthday weekend in Manhattan seeing friends—friends who inspire me in many ways from their generosity to their faith in my getting well and the love they feel for me to their own special talents and qualities. I feel so blessed to have the family and friends that I do. As I head into the transplant phase of my treatment, I feel compelled to share some of the ways my family and friends have recently inspired me.
Barbara and Dan McCabe
The moment Barbara found out that I was ill, she made the decision that I would move in with her and her family while I was going through treatments and recuperating. My brother-in-law, Dan, was supportive of this decision, though he likes to make jokes about my residing there. For instance, he will tell people: “I was the only one in Deb’s family to really encourage her to move to New York and pursue her dream of acting; I even told her she could stay with us for a while. If I’d never encouraged Deb to do this, she’d still be in Cincinnati and Karen and Jeff would be taking care of her!” We all laugh at this—it’s really Dan’s way of saying he loves me.
Dan has been great about letting me invade his home, and because I have no income and have gone through most of my savings, he and Barbara are also supporting me financially—paying medical bills, insurance premiums, not to mention the cost of feeding me. I really am a dependent at the moment, which is quite humbling, but I am lucky that I have family who will gladly and lovingly take care of me until I am well and financially stable again. Plus, this time has allowed me to bond with my godchild, Aidan, whom I love more than I can ever express.
Barbara and Dan’s generosity and love are overwhelming to me sometimes; they certainly were not obligated to bring me into their home, but they did. I have always been close to both of my sisters and I love their husbands, too. In fact their husbands have found out that if you marry one Ludwig, you marry the whole family. I guess that is what family is for: to take care of one another. Hopefully someday, I will be able to give back to them. And to top it all off Barbara is my bone marrow donor. How extraordinary that she’s also giving me back my life.
Lynn Varble
I first met Lynn on a kindergarten field trip—we sat next to each other on the bus. I didn’t know who she was because she was in the afternoon class and I was in the morning one. I recall she had a cold sore on her little mouth, but I don’t remember asking her what it was, as she said I did. I didn’t see her again until we ended up in Sister Cynthia Marie’s first grade class. We became friends quickly and that friendship has endured and strengthened over 32 years. Though she and I lead very different lives—she is a nurse and is married living in Rockport, Indiana, with husband, Dale, and her two adorable children, Kyle and Kara—we couldn’t be closer friends. Every time I visit Tell City, Indiana (my hometown), Lynn and I make an effort to see each other. She has consistently written and e-mailed over the years—ever since we left for our respective colleges at age 18.
Recently I received a $300.00 check from her. I started crying when I saw it because I kept thinking she could be using that money for Kyle and Kara. I called to thank her, and she told me that she’d wanted to do something for me when I left for New York in August 2002 because she new it would be difficult, but now was the time she felt she really wanted to help. She assured me that she’d earned some extra money and that she would rather the money go to me than to some anonymous person she doesn’t know. The money was helpful, but more than the money, it is her friendship that is the real treasure.
Lisa Breithaupt
I met Lisa in 1995 when I directed her in “The Diary of Anne Frank.” She portrayed Mrs. Frank with grace and strength—what a performance! As her director, I was so proud. Needless to say, she and I became best of friends very quickly. She went on to direct me as The Witch in “Into the Woods,” I directed her again in “The Nerd,” and we both were two of the five founding members of Ovation Theatre Company in Cincinnati. We’ve definitely been through a lot together when it comes to theater, but we’ve also shared a beautiful friendship—I was in her wedding November 13, 1999. Lisa is still one of the people running Ovation—it will be going into its sixth season this fall!
I spoke with her about a month ago on the phone and she told me that she was going to donate her hair to be made into a wig for cancer patients who lose their hair during chemotherapy and /or radiation. She has gorgeous long, dark brown, thick, curly hair. Anyone would be lucky to have a wig (cranial prosthetic is the medical term) made from her hair. She recently told me a little girl in her church is doing the same thing for children, and Lisa and the little girl decided to get there hair cut on the same day. This is a beautiful gesture and a need that is all too real—unfortunately, even for children.
Susan Book
Susan and I became friends when we both worked at CIGNA. She was in the medical division and I was in the Life, Disability & Accident department. She moved into Ravenswood Apartments, where I lived in the Hyde Park area of Cincinnati, and we started hanging out on a regular basis—going for walks and going out on weekends. Just as we were solidifying our friendship, she was given a severance package at CIGNA and eventually she found employment in Miami and moved to Florida. I never had the opportunity to visit her while she was in Florida, but a few years later she moved to Pittsburgh, and I’ve visited her there on several occasions.
A few years ago, she took her bike to Utah to raise money for the Leukemia & Lymphoma Society. She trained and rode with the Leukemia Team in Training. Unfortunately, due to a severe knee injury, she has not been able to participate again. But she has been donating time to recruit people for Team in Training. At the end of April she met with potential volunteers. Here is an e-mail she sent to me with regards to her work that night (the message really touched my heartstrings):
Hey Deb,
On Wednesday, I spoke to possible recruits at the Leukemia Society Team in Training informational session. There were only 4 people there, but that is good.
The two Society reps started the meeting out by welcoming everyone and then they played a video. I am in the national video when I did my ride in 2000. (I will show you sometime, an actress, I am not....) I kept getting teary-eyed during the video because I remembered the great experiences I had and I wish I could do it again for you. However, knowing the treatment you had, and will have, was the result of research that I helped fund made me happy.
One of the athletes in the video was a survivor from early 90's. He said when he had his transplant, he was in the hospital 4 months, but the survivor he just talked to that day said he was only in a week! That is progress! I feel very confident in your recovery.
On behalf of you, I am going to continue to volunteer to help recruit TEAM members. I may try to do a 40 mile bike ride, but we will see....
Have a great weekend.
Susan
Jeff Blom
I only know Jeff through e-mail. He is a friend of Karen Burke. Jeff ran in the Flying Pig Marathon in Cincinnati on May 2nd. He ran with The Leukemia Team in Training and raised around $2,700 for a nine year old girl, Katy, in Cincinnati. He ran 26 miles in spite of bad knees and finished in 4 hours and 43 minutes. He ran with not only Katy’s name on the back of his shirt but mine, too! In fact, he and Karen conspired to raise money for me to help with my medical expenses, as well. It was called: EuroK’s Flying Pig Challenge.
Karen Burke (EuroK is her alter ego—she discovered EuroK during her European sabbatical the summer of 2001)
Karen and I met at a party back in the summer of 2000, and it took only twenty minutes of talking to this woman to know that she would become a dear friend. We had an immediate connection. Karen has been the coordinator of much information regarding my treatment and recovery to my other friends via e-mail. She has also coordinated a couple of surprises—one of the latest being her EuroK Flying Pig Challenge to raise money to assist with my medical expenses.
Then on May 7, my birthday, she called me first thing in the morning to wish me “Happy Birthday.” I was in Manhattan for several days visiting friends, and I was not feeling well because not only was I fighting a cold (accompanied by a dreadful cough) that had hung on for over four weeks, but I woke up that morning with conjunctivitis! I was miserable all day. That evening Nelson & Beckie had a surprised arranged for me. So, even though I didn’t feel all that great, I was a good sport—I knew they’d put a lot of effort into this surprise. We took the subway uptown, got off at 50th Street, and walked south on Broadway a couple of blocks to a trendy Latin restaurant/club, Noches. The interior was gorgeous—several floors—first one was a bar, second floor was another bar and dance floor, and the upper floors were for dining. We were escorted to the 4th floor and showed to our table. The interior was dark, but there were square panels of red, blue, yellow, and green that illuminated the place beautifully.
Miles, our waiter, was superb. Bless his heart, he was trying so hard to make many suggestions for me with regards to spicier foods. I still could not taste a thing. What a shame to go to a restaurant like this and not be able to taste the cuisine. (Extremely frustrating.) Nelson & Beckie wanted to order dessert, and I decided coffee might soothe my throat a bit, but I wasn’t going to eat any dessert—if I couldn’t taste it, I wasn’t going to ingest the calories. During dessert I was feeling very sorry for myself and broke down crying. I was lamenting the fact that I had this wretched pink-eye and looked terrible, this cough was stifling (I couldn’t stop coughing) – all of this on top of the leukemia! I know they felt terrible and wanted to get me out of there, but there was a surprise yet to come of which I was completely unaware.
As we were almost finished with dessert, around 11:00, this woman comes shimmying up to the table, waving her arms in the air. I looked at her and then at the guy in front of her and back to her. It wasn’t until she plopped down next to me in the booth that I realized it was Karen! I threw my arms around her and sobbed with joy. That was the big surprise—her flying in for the weekend—it was so wonderful! Nelson and Beckie had been trying to figure out whether to have her still meet us at the restaurant or at the apartment. Nelson had called her on his cell to finalize where she would meet us. I recall both he and Beckie getting up from the table a couple of times. I can laugh about the whole situation now, and their intentions were stellar.
We left the restaurant and caught a cab back to the apartment. When we got home, Karen had some gifts for me—a ceramic martini glass she’d painted for me—pale pink with dĂ©cor on it and three words painted around it---diva, star, and princess (princess is what my brothers-in-law call me—originated, of course, by Dan) She also gave me a beautiful pink and white umbrella (large and sturdy with UVA and UVB protection). Lastly, she presented me with a card full of checks. This was what she’d collected from the EuroK Flying Pig Challenge for me—$1,250.00. Many of the monetary gifts were from people I don’t even know—absolutely generous. What started out a rather lousy birthday turned out to be a wonderful one!
Nelson Miranda & Beckie Wilson
Mr. Miranda made my acquaintance back in 1996 when I portrayed Sally Talley in Talley’s Folly. However, I did not really become friends with him until I started hanging out with Karen Burke—they both worked at Procter & Gamble in Cincinnati at that time and were very good friends. Eventually, he not only became one of my dearest friends, but also a fabulous dance partner! This Latino man has quite the moves when it comes to salsa, meringue, cha-cha, and rumba.
In April of 2002, he moved to Los Angeles and there he met a lovely British dancer, Beckie Wilson, who moved with him to New York City in September of 2003. When he moved to New York City I was so thrilled. I had only been in the area a year, and though I had made some friends, it was so wonderful to have someone very close to me here. The first time I met Beckie I fell in love with her—a warm, sincere, beautiful woman. She and Nelson have been so good to me—even before I was diagnosed with leukemia.
Every time I come into the city, they want me to stay with them. Nelson and Beckie have told me, “our place is your place—we want you to come and go as you want.” They are both so generous to me. I stayed with them for six days and five nights over my birthday weekend, and they didn’t feel like kicking me out—that’s how great they are. They also call me very often to check in and see how I’m doing (as do so many others).
Joseph Rodriguez
Joseph and I both began studying acting at the T. Schreiber Studio in October 2003. Joseph was my second scene partner and we worked on a volatile scene from Lanford Wilson’s (my favorite playwright) play “Burn This.” I enjoyed working with Joseph so much—what a pro and so talented. He made my work better, and I completely trusted him. We both gained a respect for each other as artists while working together.
When I got sick, he was one of the people from class who called (and still does) on a regular basis to check in on me. I love how our friendship has evolved and strengthened over the past five months. He is a good listener and genuine in his caring for me. I have many talented friends here in New York City as well as in other areas of the country. However, Joseph’s unique talent inspires me to perfect my craft and keep acting so that when I am cured, I will jump back into the acting world and find a way to make my mark. As he told me, “I need some good leading ladies.” “I’m a great leading lady!” I responded.
Dan Gallagher (The inspiration for writing this article)
My friend Scott Sponsler (another founding member of Ovation) hooked me up with Dan over e-mail before I moved to the northeast. Dan and I e-mailed for months (he’s a very busy man) before we actually met. One Friday night I went down to Chelsea and met him at Food Bar. In no time we were talking about everything! No topic was off limits and at times it got a little racy—it was so fun. I couldn’t believe how instantly we connected. The next day I received an e-mail from him stating—“oh, my God, you are my new best friend!” I’ll never forget it—I told him I felt the same way.
Unfortunately, Dan and I don’t get to spend much time together, but when we do, it’s like long-time friends picking up where we left off. That type of relationship is so important to me (and I have many of them). It’s not the quantity of time you spend with someone but the quality of that time.
He gave me a wonderful gift on May 6. He took me to see the new Broadway musical Wicked. I absolutely loved it—funny and touching, and it gives one an entirely different perspective on The Wizard of Oz. I wanted to cry after the show because I enjoyed it so much. Afterwards, we went to the souvenir counter and Dan (being generous) bought me a souvenir program, a CD of the cast recording, and a CD Idina Menzel (she played the Wicked Witch of the West—Elphaba) recorded. I couldn’t believe he bought these for me, but he said, “You’re going to need something to listen to while you’re in the hospital.”
A few days later, I received the following e-mail from him, and it made me look at the lyrics from Wicked more closely. Thus, he supplied the inspiration to write this article.
I just wanted to tell you how happy it made me to share the magic of this musical with you. And it's interesting to me how differently I looked at it after being reminded of the experience you are going through. And how certain songs have taken on new meaning. I truly believe that you are "defying gravity" right now. And I pray that you continue to fly as high and as far as your dreams will take you. I know that you will get past this and continue to do amazing things with your new found courage, heart, and state of mind. And I'm comforted to know that, through it all, you have a wonderful group of friends to support you through it all. I mean, let's face it girl...you're "POP-uUUU-larrrr".
I love you.
Dan
Mr. Gallagher gave me a theme song—it makes me shed tears of joy, gives me chills, and excites me every time I hear it. “Defying Gravity” is about overcoming fear and fulfilling your potential. I am not going to be afraid anymore of doing the things I want to do in life. It’s about no longer playing by the rules—some rules are meant to be broken. When this segment of my life is over, I will approach life very differently—I’ve already begun to do so. Dan bestowed on me a theme song, and I really believe it is another bit of inspiration that I will use to conquer this disease and then go forward to make my life unbelievable, and since our lifetimes are so brief, remember: there is no time to be afraid.
With all the unpleasantness, strife, and hatred that seems prevalent in today’s world my little corner of it is filled with love, and for that I am truly grateful. The song For Good* is also from “Wicked.” Glinda and Elphaba sing this when they are parting forever. The song is so touching and it expresses beautifully the affect friendship has on our lives—how deeply the people who enter our lives—no matter how briefly—leave an indelible mark on us. Because of the people in my life, I have the will to win this battle and to emerge a better person, who can make a real difference in the world in many ways—creatively, spiritually, and philanthropically.
Here are a few other notable gestures of kindness that have inspired me: 1.) Shelley Saville and Russ McCabe who have given much of their time to drive me to Hackensack for my clinic visits; 2.) Lani Ford who had an emergency appendectomy one week prior to a party for me on May 8th, and who somehow drug herself downtown to see me when she should’ve stayed home and recuperated; 3.) Shelley Saville, Bobbi Kravis, Chris Daftsios, Lani Ford, and Marni Penning, who visited me during my last couple of hospital stays when I was feeling quite lonely; 4.) Karen Ludwig Purvis, Karen Burke, Katie Rice, and Natalie Bauman for taking a week of their time to come to New Jersey to help care for me after chemotherapy; and 5.) Dena David (I have yet to meet her) who came up with the idea of putting a gift box together for me which was filled with gifts, letters, and cards from many friends from all areas of the country. I could go on and on and on…Cindy, Maria, Geralynn, Jen… (…and I’m not exaggerating.)
I wish I could list everyone who has done something nice for me, but there have been so many lovely gestures I cannot possibly write them all down, or if I attempted to do so, I know I’d inadvertently exclude someone. Be assured that every person and act of kindness is stored in my heart, and my memory is very good. I feel an enormous circle of love surrounding me, protecting me, strengthening me, and willing me to get well. I am the luckiest woman in the world to have so many beautiful people in my life, so I’m using the lyrics from For Good to express to Mom, Dad, Barbara, Karen, Dan, Jeff, Aidan and the rest of my family and friends how I feel—I love every one of you!
* Defying Gravity and For Good from the new Broadway musical Wicked –Music and Lyrics by Stephen Schwartz - I do not have permission to reprint the lyrics here, but they are worth seeking out because they are meaningful and beautiful. Stephen Schwartz granted me permission to reprint the lyrics of "Defying Gravity" in my book Rebirth: A Leukemia Survivor's Journal of Healing during Chemotherapy, Bone Marrow Transplant, and Recovery.
Monday, May 03, 2004
The future: what a wonderful place to be! The imagination envisions countless possibilities—the successful career, the riches, the wonderful family life, the eclectic social circle. So much time is spent planning, dreaming, and focusing on the future. Americans, in particular, seem to do this. We are so success, work, and future-oriented that we tend to glorify the ability to multi-task and work long hours, creating stress and fatigue, both of which are detrimental to our health.
I have always had a love affair with the future. The future held promises of a better life if only I worked harder, planned more strategically, and focused on my goals. Ah, making lists…I do so enjoy making lists. Even more than making lists, I enjoy striking items off those lists because this action produces a deliciously satisfying sense of accomplishment. I have spent a good deal of time over the past eight years devising plans and writing lists for Ovation Theatre Company, my move to New York City, actor business plans, data bases of agents and casting directors, as well as diet, exercise, and beauty regimens; all of these lists were devised with the hope of designing a brilliant and prosperous future. John Lennon’s saying, “Life is what happens when you’re making other plans,” is so true. How many of us truly spend much time living in the present? I thought I did. I thought I was enjoying life more, taking time to smell the roses, especially after I made the move to the New York area. Now I realize I was doing anything but living in the present.
I was enjoying life but I wasn’t living in the moment. I would be with friends but often (and in their company) I found myself thinking about what I had to do when I got home or the next day, or about an audition or scene work for class. My mind was rarely focused on the present. Mind clutter is what I call it. This clutter is especially active at night. I can lie awake for hours in the dark, my mind racing with a thousand (well, it feels like a thousand) thoughts, ideas, and emotions. I finally asked myself, “How can I quiet my mind?”
I tried deep-breathing exercises, but that rarely worked because I didn’t have the discipline for it, and my mind would inevitably commence racing once again. This lack of discipline was bizarre because I have extraordinary discipline in many other areas of my life. I had been going non-stop in body and mind. When I lived in Cincinnati, the last year or two was spent working full-time at Cigna, managing the theatre company, acting, writing and performing cabaret shows, taking dance classes at Arthur Murray, and salsa or swing dancing two to four nights a week—talk about the Energizer Bunny®!
Once I moved to the northeast, my social life slowed down considerably, mainly because I only knew a few people in or near the city. Then just as I was developing friendships and getting out socially, leukemia interrupted my budding social circle. I found myself in the hospital faced with a cancer diagnosis and making decisions regarding treatment options. I began re-evaluating my life choices, reflecting on the positive and negative elements of my life, learning how biography becomes biology, and in the process, discovering that if we can make ourselves ill then we can also heal ourselves. The decision to be an integral force in my own recovery, in addition to modern medical technologies and treatments, led me to utilize three methods of healing that I’m convinced helped restore my health. The methods I refer to are prayer, meditation, and guided imagery/affirmations. Through these three practices I have been enjoying life, despite the cancer, and living more fully in the present.
One may ask, “How can you enjoy life more and be a cancer patient?” First, I don’t feel I have a choice. I’m not dead yet and I refuse to give into this illness. When I feel well and my body is not neutropenic, I continue living my life, being as active as I can. I am a positive force that wants to spread light and goodness in this world right now, not wait until I am in remission. Every moment is precious, so why wait?
Second, I have the time now that I didn’t have in the past (due to all my commitments) to devote to exploring these practices. In the past, I merely contemplated these things, although I’ve always been into prayer. Meditation is something I’d wanted to try, but never made the time for it. While I was in the hospital for my second chemotherapy treatment, Beckie brought a gift for me. The outside of the box read: A Step-by-Step Course on how to Meditate—Insight Meditation. It contained a book that detailed ten lessons, two CD’s of guided meditations, and study cards. I have progressed to lesson six and am learning so much about myself and my ability to calm the mind clutter. It is still difficult not to let my mind wander, but the more I practice, the more I am able to concentrate. This concentration has led to mindfulness, and mindfulness has led to embracing the present moment.
Many of the books I’ve read recently, and I’ve read many, reinforce the “living in the moment” concept and suggest how to use mindfulness to achieve this goal. Some books I’d recommend include: The Miracle of Mindfulness by Thich Naht Hanh, The Power of NOW by Eckhart Tolle and The Four Agreements by Don Miguel Ruiz. Meditation is teaching me how to calm the mind and to be in the present by focusing on the breath, sounds, body sensations, and steps (during walking meditation). I have even created some of my own meditations using what I’ve learned so far in my studies.
Living in the “now” is not an easy task. It is quite difficult, actually, but it is definitely a worthwhile pursuit. I’ve found that when I am truly present in the moment, I am neither anxious nor stressed about the future or the past. I have oftentimes found myself anticipating troublesome or conflict-riddled scenarios so that I could practice how I might handle these situations. How counter-productive is that? Several people have confided that they do the same thing. We sabotage our current peace of mind by fabricating problematic future situations that may or may not occur. These illusions create torment and suffering, thus ruining our peace of mind and happiness in the “now.” By being committed to living in the present ,the obsession about the past or the future disappears. Of course, that’s not to say we never plan for the future, but it is important to keep it all in perspective.
Make plans but don’t be a slave to planning. As Eckhart Tolle suggests, “Learn to use time (what he refers to as “clock time,” which is intrinsically linked to the concepts of past and future) in the practical aspects of your life (i.e.—planning a trip or setting goals) but immediately return to present-moment awareness when those practical matters have been dealt with.” He continues to expound on this, “…within the sphere of practical living, where we cannot do without reference to past and future, the present moment remains the essential factor: Any lesson from the past becomes relevant and is applied now. Any planning as well as working toward achieving a particular goal is done now.”
I have a long way to go in achieving success in my endeavor to live in the “now.” However, I am cognizant of when my mind strays to the past or the future, and this awareness is the first step in changing life-long behavior patterns. When I find myself worrying, getting angry, or day-dreaming, I bring the focus back to my breath, to the steps I am taking, to the position of my body, or slow down my actions.
This is my spiritual regimen. I hope to continue following it once I am healed and back out in the “real world.” Right now I have abundant time to engage in these spiritual practices. I can spend twenty to forty minutes meditating, twenty minutes praying, and twenty minutes doing affirmations or guided imagery exercises. That’s a good amount of time spent cultivating spirituality, but right now I need it. I believe all of this has aided in my well-being, especially throughout chemotherapy. Regardless of recent studies claiming to have found no positive correlation between possessing a good attitude and increased cancer cure rates, I still maintain that a positive attitude and being proactive in my own healing are effective survival strategies. And if nothing else, it has made my life more pleasant, and helped the people I love deal with my illness better, which has to count for something.
Following are some insights and observations I’ve recorded in my journal throughout my mindfulness practice and spiritual studies that I want to share. Some are chronicled in my book, Rebirth: A Leukemia Journal, so I apologize for any redundancies, but they are included here because of their significance to me. I hope these insights and observations are helpful.
January 30
I have arranged the meditation area in my room. It’s so lovely. A small box is situated on the floor beneath the window sill, which will enable me to gaze out the window (should I wish) while I’m meditating. A taupe scarf decorated with a black and red oriental pattern is draped over the box. On the surface of the box is placed a miniature crystal owl (given to me by a friend of Lani’s), the faith box (Karen B's gift), a small, white vanilla-scented candle, a tiny, white ceramic bowl with blue flowers painted on it and filled with an assortment of rocks (Bobbi’s contribution), a plastic bottle of holy water that Dad gave me, and a four-inch wooden box that holds my rosary and two gold Mary medallions.
I have treasured this tiny wooden box since the summer of 1994 when Tina, a Godspell cast mate, gave it to me. Tina, a gifted artist, painted the box. The figure of a woman—or an angel, perhaps—is on the lid, and she resembles Edvard Munch’s women in his paintings, Puberty and Dance of Life, only Tina’s rendering is much prettier. I will always remember Tina’s strength and character, especially having endured the loss of her only child shortly before I made her acquaintance.
On the floor to the left of the box are two Mass cards that Mom sent to me and on the right side of the box are my list of affirmations, the Insight Meditation kit, and three books: The Miracle of Mindfulness, God Calling, and 365 Tao. It’s an inspirational, spiritual area adorned with items that are significant to me. It sounds cluttered, but the items are displayed in an organized fashion.
February 3
12:15PM- I completed twenty minutes of meditation. It was quite relaxing and surprisingly, my mind did not wander much. Of course, it does wander, which is typical of me. I’m working on breath awareness and how that awareness enhances my experience of the present moment.
February 6
I meditated. Will there ever be a time my mind doesn’t wander? I know meditation is a discipline which takes practice and patience, but I want the focus and discipline now. Yes, my impatience is surfacing. The goal: continue to meditate and be compassionate toward my inability to concentrate for even short periods of time. I know this practice is beneficial to my emotional, physical, and spiritual healing. It may also prove beneficial to the larger world as I become a more serene and compassionate individual passing serenity and compassion on to others.
February 11
Today is the Feast of Our Lady of Lourdes. Mother enrolled me in a special healing novena of masses from February 5th through the 11th. I said a prayer to Our Lady of Lourdes to rid me of the leukemia so that I may go on to lead a productive, healthy, and long life. I blessed myself with the holy water Dad sent. My parents definitely believe in the power of prayer and so do I.
I added another note to the faith box which already includes several requests at the moment. Today's request read: Dear Lord, please let my insurance transition be a smooth one and let me stop worrying about it. Let me trust that You will take care of it. All will be well. Amen.
Before prayers, I meditated. I am deriving much enjoyment from my meditation practice. Afterward, I studied (again) lesson one in Insight Meditation and read chapter three in The Miracle of Mindfulness. In chapter three, Thich Naht Hanh promotes the benefit of setting aside one day a week as a “mindfulness day.” I would like to try that, but I have trouble remaining mindful for ten minutes; hell, who am I kidding, I have trouble remaining mindful for two minutes. I seek to practice mindfulness daily, both in structured meditation as well as brief periods of breath awareness throughout the day. I try to remain conscious of this endeavor as much as possible so that mindfulness will eventually become habitual throughout each day.
Today I experimented with mindfulness while making a cup of tea. By performing the task slowly and methodically, the nuances of each action created a deeper awareness of the process and my mind-body connection to it. To begin, I was conscious of the feel of the mug—it’s cool, ceramic hardness and the weight of it in my hands. I examined the colors of the mug, its various shades of brown, dark blue, and cream. I listened to the dribble of water leaving the spigot in the refrigerator as it filled the mug. Next, I followed the movement of my arms as the left one opened the microwave door and the other placed the mug into it. The slamming door and the whirr of rays heating the water broke the silence.
Next I opened the tea packet exploring the feel of the paper and the smell of the tea as the bag was pulled from the wrapper. The beeping of the microwave signaled the water was ready. I retrieved the mug, observing the steam rising from it and absorbing the heat in the palms of my hands, and then gingerly placed the tea bag in the bubbling water. This three-minute process was executed with slow precision and careful attention. Not only did I make the tea in mindfulness, but I also drank the tea in mindfulness, savoring the taste, smell, and warmth of the libation as it traveled down my throat into my belly. It is interesting how enjoyable making and drinking a cup of tea can be when attention is paid to the details.
I should live my life in mindfulness because it fosters living in the moment which creates peace of mind and alleviates anxiety. By paying attention, one finds there is no need to hurry through life. I don’t want to hurry through life anymore; I’ve done that and it’s exhausting. I aspire to a place of serenity and clarity, even in the midst of chaos.
March 1 – Guided Imagery
I listened to the Chemotherapy Guided Imagery cassette for the first time last night. I’ve had this tape since January. It was wonderful. Powerful emotions flowed through my being and tears of joy streamed down my cheeks. When I was done listening to the cassette, the catharsis had produced a peaceful and relaxed state. I then attempted to listen to the affirmations, but fell asleep during them. In fact, I slept uninterrupted until 7:30AM. I haven’t slept that long in months.
This morning I prayed a rosary then listened to the affirmations section of the cassette. I must buy more of these tapes. The exercises have been rejuvenating to my mind and body. I feel centered, positive, and more energetic. This sense of well-being has to be beneficial to the healing process.
March 2
I went for a walk this afternoon and incorporated walking meditation into it. It felt good to get out and move my body. My mind only wandered about ten times during the forty-five minute trek. I focused on the warmth of the day, the soft breeze on my skin, the feel of muscles rotating in my calves and thighs, and the pounding of my feet on the pavement as I concentrated on the “lift, move, place” mantra that I was mentally labeling. I felt mindful and centered and was so grateful to be able to enjoy the gorgeous day outdoors.
March 7
I finished reading The Power of NOW. It reinforces all that I’ve been learning. Being present and living in the “now” are deceptively simple concepts; in reality, they are quite difficult to achieve. It is important for me to live in the moment because it will help alleviate much of my anxiety. Today, as often as I was conscious of it, I focused on connecting with my breath and my body—its movements and sensations.
Tonight, as I was getting Aidan to sleep, I experienced being completely immersed in the present. Aidan was inconsolable after Barbara and Dan left for the hospital. Barbara had been vomiting most of the day and her doctor feared she was getting dehydrated, so instructed her to go to the hospital. I did everything I could think of to comfort Aidan and ensure he felt safe and loved. He sat on my lap, crying as I gently rocked him back and forth. I was so moved gazing upon his sweet little face. I love him so much. It was only Aidan and me in that moment. His crying was the only sound to impose upon the silence in the house. I embraced the darkness of the room, the feel and warmth of his tiny body cradled in my arms, the soft, rocking motion of the chair, the sound of his and my breathing, and the feel of hot tears rolling down my face as I watched the tears cascade down his. He looks like a little cherub with his chubby cheeks. He’s so beautiful.
After two attempts of putting him in his crib, the third time was a charm. I watched him sleeping, finally at peace. In that moment, I experienced a deep, unconditional, overwhelming love for this child. Nothing else mattered in that moment, and it allowed me to know the extent of the love I am capable of feeling and giving, which is precious knowledge to possess.
March 9
The Four Agreements by Don Miguel Ruiz was a gift from Michael S. It was one of the many gifts in the friendship box Karen B delivered in February. This is another book that reinforces everything I’ve been reading and studying. It’s odd, but I am finding that I’m enjoying my life more now during my illness than I did previously, and much of that has to do with my living more fully in the present. Every morning this week, I have roused from my slumber bursting with anticipation and excitement to start the day. I long to jump into the day and begin writing, meditating, and tackling whatever challenges may arise.
I read The Four Agreements in about two hours. (Unfortunately, I cannot tell you what these are because doing so would be copyright infringement, but I think these agreements are sound advice, so I recommend picking up a copy.) I’ll e-mail Michael S to thank him for the book again and let him know my thoughts. I think he’ll enjoy knowing my comments. Of course, I am making assumptions about his reaction. However, if he doesn’t like my comments, I won’t take it personally ;-)
March 11
I’ve had a revelation about control. There is so much in life we cannot control, and I have found that is particularly true with my body. I’m a control freak. Alright, I’ve admitted it.
Anne Cushman wrote in Yoga Journal (she was referring to separation anxiety between her and her pre-school-age son in her article "Calm, Clear Mind"), “…it’s through such small moments that we train our capacity of letting go and begin to come to terms with the fact that in the end, we can’t control anything but the intention we bring to our actions.”
This conclusion is so true. It's simplicity is brilliant.
March 13 - 365 Tao – Discovery
Meditation is a process of discovery, of slowly exploring how you function as a human.
People ask, “Is meditation necessary?” If you want to explore the innermost parts of your mind and ascertain who you really are, there is no more ideal method. Mere introspection is not deep enough, and psychological counseling will not necessarily bring you face to face with all parts of yourself. Only the depth and solitude of meditation can help you learn everything. Discoveries are there. We need only enter the mind to find them.
—Deng Ming-Dao
March 24
Yesterday morning around 5:30AM I had a very positive meditation experience. I was wide awake, and the sun, casting a soft pink glow across the sky, was just beginning to rise over the rooftops. I’d been awake for over an hour, so I decided to get out of bed and devise my own meditation based on the techniques I’ve been learning. I also meditated for the first time without using a CD to guide me.
I got out of bed, arranged my pillow on the floor, lit the candle, opened the blinds, and began meditating. I alternated my awareness between sounds, breath, body sensations, and “choiceless awareness.” “Choiceless awareness,” as defined by Joseph Goldstein in Insight Meditation, “is a state of great receptiveness, where we simply open up to whatever object arises from one moment to the next.” In this morning’s meditation session, planes, birds, trees, the flicker of flame, the ticking of the clock were all alternating objects of my awareness. I sat for thirty-five minutes, which is a record for me, and I was only distracted a few times. I think I’m making some progress.
March 31
This morning as I was meditating and looking out the window, I found my concentration stray from focusing on the breath to focusing on a small tree in a yard across the parking lot. I began contemplating the tree’s nature. It probably stands all of fifteen feet tall, has a very narrow trunk, a few branches, and devoid of leaves—a skeleton of a tree. It looked fragile and scrawny, and its vulnerability touched me as I watched it swaying in the breeze. Then I remembered it possesses strong, sinewy roots that grasp tightly to the soil beneath the earth's surface.
This underwhelming sapling will someday transform into a glorious, robust refuge for many life forms. Its trunk will be wide and sturdy, it may reach heights of forty or fifty feet, and its branches, adorned with emerald leaves, will expand in every direction toward the sky. Birds, insects, squirrels, and numerous other beings will seek shelter in its branches from the wind, rain, and sun. These creatures will discover a playground and a home. Human beings will derive pleasure gazing upon the tree’s beauty and find comfort in the shade of its boughs.
As the seasons change, so will the tree. Its green leaves will transform into an artist’s palette of the most gorgeous hues of crimson, brown, gold, and orange. As winter approaches, it sheds its autumn cloak revealing skeletal, gnarled, bare branches exposed to winter’s chill. Soon spring arrives attiring the tree with green buds and/or colorful flowers, and soon thereafter, it dons a gorgeous, lush, green, summer frock. The cycle is complete and then it begins again.
When one contemplates the beauty and substance of a tree, as well as the fact that it is an oxygen-producing plant that enriches the planet, it is inconceivable how people can be apathetic about the destruction of the rain forests or to the logging industry’s desire for unlimited access to woodlands that they can devastate for the sake of monetary gain. The earth’s natural resources are finite, and someday these forests may no longer be at our disposal to enjoy or destroy (as some seem wont to do). Hmmm…it is interesting how one small thought can evolve into larger issues relevant to today’s world. Meditation really does help us connect to everyone and everything. We are not isolated beings, we all affect on one another and to all life forms on this planet. This interconnectedness is one more thing I am learning on my spiritual journey.
April 6
In The Miracle of Mindfulness, Thich Naht Hanh narrates a story by Tolstoy about an emperor searching for the answers to three questions:
1.) What is the best time to do each thing?
2.) Who are the most important people to work with?
3.) What is the most important thing to do at all times?
The answer is this: “Remember there is only one important time and that is now. The present moment is the only time over which we have dominion. The most important person is always the person you are with, for who knows if you will have dealings with any other person in the future? The most important pursuit is making the person standing at your side happy, for that alone is the pursuit of life.
…often we forget that it is the very people around us that we must live for first.”
I love the wisdom behind this tale because it is so true.
Conclusion
Living in the present alleviates the stress of planning for and anticipating conflicts in the future. Living in the present eliminates dwelling on the past. The past is gone, learn from it and move on. What I’ve discovered is that when I’m firmly ensconced in the “now,” I possess a sense of serenity. This serenity is new and exciting, however fleeting it may be as a novice practitioner of mindfulness. Someday I will harness the power of being present in the moment because it is the only place we can tangibly exist. The present: what a wonderful place!