Monday, August 16, 2004

Jumping Over Hurdles
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.

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