JQ's Journey/Journal
In this blog, I want to share how I'm healing from bladder cancer and other inflammatory illnesses. It's a journey that's mental, emotional, and spiritual, as well as, physical. As I walk through it, perhaps, someone else will find the inspiration and strength to do the same.
Is This Faith?
Now, this day, this moment is a particularly difficult time for me, due to things that are not directly related to my physical health. I am riding the rollercoaster of events that make my experience stressful and challenge my faith. I wrote about faith, my faith, my philosophy of faith, in one of my first blog entries. I wrote that I don't believe in a counterfeit faith that savors the delicacies of life when all is good, and proves to be "soft" during the true tests of strength. I wrote that I do not believe that healing is always the instantaneous signs and wonders of blind eyes opening and lame legs walking. I do believe in miracles. Who's to say that seeing something change slowly into perfection is not as much a miracle? More often than I'd like, my faith is tested.
Yes, I am a Christ follower. I believe what I have read about him. I don't, however, believe everything I've heard about him. That's why, in as much as I believe in the Christ who healed all manners of disease, and who passed on the same power to those who believe, signs and wonders are not the heart of my faith. I know that it is not in storing up physical and material treasures. I know that it is in seeking first the kingdom. In doing so, I am discovering what the kingdom is. In a simplistic word, to me, it is maintaining joy, peace, contentment, and balance; it is finding God's Perfect Love through the humility of a servant's heart. Of course, it includes repentence and forgiveness...everyday. I am not perfect. And yet, it does not include feelings of failure or guilt about my imperfection, because I know that my redemption has already happened, and I am gradually catching up to it.
On days like today, when I feel like a failure, when I feel exhausted, I know that I can say all of this in the silence of prayer and meditation, and no one will pressure me to be strong. The Everlasting Arms just hold me, so I don't have to be strong. Just as I did when my children were sick with bronchitis or crying from a bruised heart, the Arms just let me cry until I feel like a conquerer once more. I am honest enough to say that I'd like some mortal arms to hold me, too, while I cry myself back to full strength. I remember the vaccinations I had to endure as a child. They HURT! And no amount of cradling, of sweet talk and positivity, would have made them not hurt. They had to be. But a pair of warm, loving arms would have made it worth the pain. Some days come with experiences I'd much rather not have. I could easily be wimpy, believe me. God knows I'm feeling the worse for wear. I could be angry that it doesn't let up or that no one comes to my rescue. I could easily decide that there is no God, and that life is no longer good. I could. But that wouldn't be faith.
Strumming Through My Pain
My followup cysto exam, when we will check the status of my bladder lining, is set for March 23. In the meantime, I'm distracting myself by putting some musical irons in the fire. I picked up my guitar again about two weeks ago. How long has it been? Well, the fingertips on my left hand are sore, that's how long. I'm building those calluses again. And it's worth every bit of the pain to play better each time I return to the instrument. An interesting fact about me is that I have a very short attention span. Years ago someone suggested that I might have A.D.D. I took it as an insult back then, but now I think it might be true. I've learned to appreciate that I'm wired to complete a creation within a very limited window of time, before I need to move on to the next creation. I am project-oriented, which is why careers and full-time jobs have been my failures. When I do focus on something, it becomes an obsession for a time.
I started teaching myself to play guitar sometime in 2002. I bought a low-end, thin body acoustic-electric, only after I'd brought three or four models home to try them out. If I've learned anything it's that it's a process. I'm assuming that no one ever arrives at the point of perfect-guitaristness; not even Carlos Santana, who, by the way, I am not trying to emulate. I was actually inspired to play when I was a sophomore in high school, and my dad left his electric guitar lying around the basement. Of course, my voice was more important to the family band at the time, so the strings fell by the wayside. Years later, after I'd studied music at Pacific Lutheran University, I heard Lauryn Hill accompanying herself on MTV Unplugged and got reeled in. Yes, I've reached that point in self-teaching where one needs an outside source to usher them to the next level; but seriously, no one could put up with having me as a student...for long. So I've had an on again-off again relationship with the instrument. I hadn't played for months, until two weeks ago.
Once I picked up my guitar again, I began spending lots of time with it and with others. Interest became obsession over the years, until I have learned the names of the best luthiers (guitar builders), their products, what woods and technologies they use, and their price ranges. Last week, I thought the ultimate guitar for me was the Seagull Performer Mini-Jumbo Q1, and it is a beautiful instrument. But no one has one in stock that I can play. So I wandered into Ted Brown Music to check out the Taylors again. OMG! I've fallen in love with Taylor's Grand Symphony and Grand Concert models. I only want them to play simple tunes, like my song, A Shepherd's Praise, which blends the steady strumming of add9, minor, and suspended chords, with a contemporary, pop-country-gospel seasoning of the text from Psalm 23 (it's definitely NOT your classical 23rd Psalm). So I'm out there strumming guitars I am never gonna own...well, never say never. Right? May the best one win.
It's Beautiful!
According to plan, I should have another cysto exam in early March, to check the status of my bladder and to monitor the effectiveness of the mitomycin (chemotherapy) instillation. I received the instillation, an injection of chemo into the bladder, in October, when the four tumors were removed. The treatment plan anticipated an 8-week healing process. My "older" blog readers know that I developed an infection on one of the spots that was cauterized. That happened one week before it should have completely healed. So I was back at UW Urology having urinalyses and cytology studies to determine why there was blood in my urine again. And after a round of antibiotic, I have been symptom-free since mid-January, except for occasional, needle-sharp pains.
My relationship with this condition is strange, to say the least. It won't kill me, in part, because I won't let it. It is a nuisance, yes. It is often disabling. And yet, when I first saw the tumors on the monitor screen, I thought and said,"They're ugly things!" And then, I was surprised by the doctor's response. "Well, I've seen a lot of these things, and yours are actually quite beautiful." What? I thought. Instead, I replied,"Really?" She finished by saying,"They look like sea animones." What? I thought again. But as I continued to look, I had to agree,"Yes, they do." They looked like long animones waving around at the bottom of the sea. This is a little weird. Then again, leave it to me to have beautiful cancer. I still don't know how to process that, but I asked the doctor to take pictures so I could prove it to people. It's that the way to deal with this illness?
Listening
The sun has set on my last day of solitude. In these last fifteen minutes or so of the last day of my four-day break, I am listening to The Shining Place by Janeanne Houston. Janeanne is my former private voice instructor, and what a refreshing experience to hear her sing, instead of me. It is one of those things that has been right within my reach all this time; and now that I realize how precious are the moments I share with everyone who comes through my life, I am taking the time to listen. Her voice is soothing in this last fifteen minutes. This time tomorrow I'll be reflecting on my day at work, and the sheer anxiety I feel about my life, in general.
Sometimes I wish for someone to tell. But there is no one who will listen for the hours I will need. I don't want them to tell me how I should think, or feel, or what I should say. I don't want to hear remedies and solutions for getting well. As selfish as it sounds, at this moment in time, I only want to be heard. But for now I've only put the kettle on for a cup of hot tea.
So Much Beauty
I am sitting here on the second day of a four-day break from work, feeling like there was really no cause for concern. That I never truly had bladder cancer. I couldn't have. I just reorganized my cluttered bedroom closet and I feel so much lighter and physically fine, except for the slight irritation of my lower right eyelid (probably because I resumed using makeup too soon). I have Sarah Brightman, Jubilant Sykes, Jessye Norman, Strings of A Nubian Groove, and Debussy, all in the CD changer. I am killing time at my computer. How blessed I am with the freedom, the comfort, the joy to do these things in solitude. I spend a lot of time there, in solitude; perhaps, more than anyone should. My 22-year old son came over for a few minutes, got what he came for and was back out the door. He seemed concerned that I was eating a bowl of oatmeal, which he considers to be slim pickings for a meal. I explained to him that it was appropriate to have oatmeal first thing in the morning, as opposed to a chicken fried steak with hashbrowns. Besides, I had a banana to go with the oatmeal. He insisted that I call if I changed my mind and decided to go grocery shopping after all. So now, as I am typing, the dishwasher has stopped and Jessye is singing contemporary French chansons to the accompaniment of pianist Michel Legrand. How could I possibly have had cancer in a world where there is so much beauty? Life has always been good!
Doctor, My Eyes...
The beautiful right eye you see before you has been infected by what I thought was an allergy to eye makeup, but has turned out to be blepharitis. My eyes are puffy; I look like I've been pulling all-nighters all week. The right one itches and also hurts too much to sooth. I have to laugh once again because I'd much rather do that than complain about the procession of minor ailments I've acquired since mid-October. In the last year, I have seen two urologists, an urogynecologist, a nephrologist, and a vascular specialist. I will soon add an ophthalmologist to that list. I dare not ask What next? I rather intend to spend my well-earned weekend making music (I need to write some songs and poems) and reading my Julia Cameron book. I'm just getting my singing voice back after having pharyngitis for more than a week, so I will most likely do some vocalizing as well. I've got my warm, cozy little nook. I've got wholesome food. I've got my piano, my guitar, and my favorite CDs. Life is good! I really don't know what else to say.
Unfinished Business
In the interim between cysto exams, I've had some time to process thoughts and feelings about my personal experience with bladder cancer. Unfortunately, I am no closer to drawing any definite conclusions. I haven't cried about it. It would do no good. It would only drain the energy that is much needed to change my life. That is my quest. What does make me cry sometimes is the struggle with challenges that deplete my limited resources. Life demands more than I have sometimes, or it consumes that which is vital to my existence. It takes my body. I am particularly anxious at this time, knowing how precious time has always been, and how much I still have to do. I should be moving, acting on decisions, and making things happen. As much as I am driven each day to do something, to make things happen, I am frustrated. My frustration is the fire that is building inside me, which I suppress, because my goals, my unfinished work cannot be achieved through spontaneous combustion. They can only be accomplished by making things happen. And it is not for me to wait for divine intervention. I have been empowered from birth to make things happen. So I try again...and still I rise. I rise to face the same challenge from a different angle.
I was reading David Servan-Schreiber's book Anti-Cancer: A New Way of Life today. I remember thinking, these are a lot of my own thoughts about learning that I have cancer. He wrote about the initial surrealism of that moment, about the loss for the words to respond, and about the strange reactions of family and friends who don't quite know how to offer support. He wrote about realizing the need to appreciate the life he'd always had. This is not the need to think about survival or dying or treatment all the time, but rather, about the urgency to do all the things he had put on hold. His words are egging me on as I am anxious to finish a ton of unfinished business.
What Is Cancer?
What is cancer? Most people don't even know. We are fighting what we do not understand, as well as, what we cannot see. In any form of warfare, it is important to know not just the enemy's whereabouts, but how that enemy lives, eats, and sleeps. One has to know where the enemy's weakness lies in order to formulate a strategic plan of attack. Sometimes it's good to know the enemy's origin, what it's made of, and how it thrives. And so I believe it is with cancer. I've said it before. I'm not going to die of bladder cancer. I will die of something, but it won't be this bladder cancer. My urologist concurs. At worst, it will be something I'll have to maintain for the rest of my life. That means I'd have to strictly adhere to the practice of living healthy. Some people believe that the only way to apply faith to healing is to believe that if they have enough, God's grace will reverse years and years of self-inflicted abuse and toxicity. Someone might ask What could be greater than being healed of cancer? But I am asking What is the good in being healed and continuing on the path of self-abuse? I believe in healing and in a higher purpose, which is, learning how to live by purging out the poisons that helped the cancer grow. I do not want the healing without change. When I am truly free, I do not want to relapse.
So I begin with What is cancer? Here's how I understand it: normal, healthy cells in the body contain a DNA code that not only determines the physical and emotional traits of an individual. The code also tells the cells how large they should become, how they should be shaped, and when to stop growing and splitting. It keeps us from growing extra body parts. That's my take on it. Cancer cells, however, as one scientist described, occur when normal cells forget their DNA code, not knowing how and when to stop. Now the question is How does that bring on illness and, sometimes, death? Well, the cancer cells rob surrounding cells of oxygen, destroying them, invading tissue, and forming tumor. A tumor is just extra growth, of unnecessary stuff. So to sum it up, cancer is cells out of control. I used to think of it as a dark and ravenous parasite that devours human flesh. There's often no pain associated with cancer, until one begins chemotherapy. There can be symptoms of fatigue, weight loss, and other things with the restriction of oxygen to the cells that normally heal and regenerate throughout the day and overnight. But I can't help but wonder: What else is cancer?
I Have A Confession to Make...
I haven't been entirely honest about things. The truth of the matter is, I haven't been eating as healthy and as often I should. I am still microwave-free at home, but I've been nuking my meals at work. It's much more convenient than warming food on the stovetop, and when one has only 30 minutes for lunch. I still cook my food at home, for the most part, but I'll occasionally pick up a microwaveable meal for the next day's lunch. I know it's wrong, but I have to eat, and there are days like today when I just feel like coming straight home and crashing for the night. It's so easy to get away with it right now, because the bladder cancer symptoms seem to be quiet at the moment. There is no urgency to be diligent. And yet, I have every intention of sticking by my resolutions to eat and live healthy. I just need to catch up, perhaps, when the next pay period comes around. Perhaps, by some miracle next month, my income will have increased, all my issues will have resolved, and I will have gotten right back on that wagon to wellness. In the last few days, I've confided in several coworkers about my current life challenges. That's something I rarely do. But I shared because they asked. Today, one of them surprised me, anonymously. They left a gift in my mailbox: a copy of Suze Orman's book The Money Book for the Young Fabulous & Broke. (I love the Young and the Fabulous.) There was an envelope inside. Needless to say, I spent the day trying to figure out who had signed it Secret Helper. Now, I am not thinking that this book is going to fix the mess I've made of my life, but I appreciate the thought that comes with it. It says I care and I want to help. I am smiling.
P.S.--The congestion in my chest sounds and feels like bronchitis, although I have yet to receive a professional confirmation. My throat is no longer scratchy or sore. i have no fever. There's just a burning pain in my chest when I cough. If it's still there in the morning, I'll go to the doctor. And y'all keep on being healthy!!
My Musing Day
Another gorgeous day in the neighborhood today. The sun was brightly shining, even though it was a bit nippy out there. Maybe it was just me who was cold. Beginning with Monday, I experienced my usually watery eyes, started a migraine on Tuesday, and developed a scratchy throat by Wednesday. I tried drinking more water, gargling with turmeric water, drinking ginger and honey tea, Cold Care tea, and lemon and honey tea, but I'm still scratchy. This morning the discomfort had moved down into my chest, and now feels like an upper respiratory infection without coughing and congestion. There's just the chill and a fullness in my chest. So I cut my day of leisure short to come home and nurse myself. That seems to be what I do these days. It's been a challenging past two weeks, with the car breaking down and with juggling medical and financial concerns, in addition to work. I'm tired. A highpoint of the week was seeing a friend at an after-school workshop. She is a bladder cancer survivor, as well, and I don't see or hear from her very often. Of course, she encouraged me to keep in touch with the URO (urologist) about what's going on with me, since minor bleeding or spotting seems to be an ongoing thing right now. I'm also browsing through the Book of Psalms, getting to know more passages, figuring out which ones I'd like to interpret as compositions for my Book of Songs. I thought I'd been working on this project for about two years, but it turns out that I composed the first one in 2005. Wow!! Gotta do something with it. Last night, I wrote down the chords for another song, so I feel a tiny sense of accomplishment. Though I can only sing sparingly with a sore throat, I am encouraged nevertheless. There is still music. I love it!!--JQ
Fried Banapple
My baby daughter shares my culinary taste for fried bananas. She would love this variation I made for breakfast this morning. Since I've lost my appetite for raw apples, and prefer the Gala to other varieties, I chopped one up and cooked it with a banana I had peeled, sealed air-tight in a container, and kept chilled for a couple of days. I topped my banapple with some chilled berries, and ate it with scrambled eggs and an English muffin. Life is still good and so is the food. Yes, this WAS good.
Still Dead Dodge
It's official. My car needs a new starter. Well, at least, figuring out how to pay the mechanic keeps me from thinking about my bladder.
Dead Dodge
I stopped at Top Food & Drug today before going to an appointment in downtown Tacoma after work. The person I was going to meet called me on my cell to say that his car had died on I-5 on the way down from Seattle. We rescheduled our appointment for next Monday. Now, how's this for a coincidence? I headed home, to get out of the windy rain, and to jump into a hot shower, when my clunker of a vehicle wouldn't start. The interior lights, heater, and stereo worked fine, but the car wouldn't start. It wouldn't even take a jump. It was and still is as dead as a Dodge doornail. And now, the words of that young technician at the Sears Automotive Center, "Yeah, your starter is going. Want to go ahead and take care of that?," keep ringing in my head.
I do know that this has absolutely nothing to do with my medical condition, but I think it's just hilarious how stuff keeps on coming and happening, regardless of the hopeful signs of life elsewhere, that my bladder irritation IS clearing up. Remember that assembly line metaphor? The line just keeps moving, and I never seem to catch up. Yeah, that's where I'm at right now. I need a major break from having to deal with one crisis on top of another; and as easily-solved as this problem seems, that's truly not the case. I would love to be able to get my medical symptoms to disappear before I have to manifest funds that I don't have to repair an old car. My two other solutions include buying a new one (with money I don't have), and taking the bus, which would add ten more years-worth of stress to my life. I wish I could take a breather before something else in my life breaks down. Ok, that's quite enough whine. I think :). --JQ
A Day of Leisure
What a blessing to have awaken to what has to be the most gorgeous day of this winter. It was a day to linger and enjoy whatever I chose. It was a beautiful day for a walk, so I went for one and clocked more than 6,200 steps on my pedometer--not a marathon, but a good start. Of course, I had some soup during my outing. Couldn't leave that out. To be honest, I drove the car to the town center again, which is 3-1/2 miles from where I live, parked it near Barnes & Noble (my hood), and walked around the place twice. I sat down in the B&N Cafe for about 45 minutes or so, browsing books and magazines. I was intrigued by a cookbook written by the rapper and hip-hop artist, Coolio. The language was colorful, to say the least, but I thought the menu of dishes was impressive. I honestly expected soul food, but got a good lesson about stereotyping. He calls himself the Ghetto Gourmet, and prepares beautiful dishes of salmon, tilapia, and snapper.
Anyway, I was inspired by his and other books to pick up a few groceries, which I usually don't do in the middle of Sabbath. I've been compiling my own best recipes of meals I started making for my low-acid diet a few years ago. I want to appeal to those who are used to eating soul food, but need to let it go, and eat lighter and healthier. But I also want to offer food preparations for cleansing and healing. My new menu has allowed me to continue eating all my favorite veggies, only more of them. (In fact, I have some collard greens that have started wilt in the fridge, so I must cook them now.) However, it requires me to eat much less meat than I once did. I gave up fast food years ago, but will occasionally have a SubWay veggie patty sandwich in a pinch. So, in case their is someone out there who loves the richness of soul food, but who needs to give it up, along with white flour and sugar, processed food with additives, dairy, and other mucus-causing things, I am compiling my recipes. I have a long road ahead before I have a complete book. For now, I will end this beautiful day of leisure by resting.
Followup Cysto
First, the results of the cytology or cell study on December 22: my bladder cells are normal; there are no new cancer cells. Secondly, the urine culture did not reveal much because it may have been diluted by drugs I was taking at the time. And finally, the cystoscopy or cysto showed a "good-looking" bladder lining, except for one area that hasn't healed as quickly as it should. It might be infected and may be ulcerated, which would explain the bleeding. (In case I've never mentioned it, I always watch the cysto procedure on the monitor, and see the inside of my bladder as the doctor explains what's happening. So I've seen the patch that hasn't healed. It's amazing how much blood loss I've experienced from such a small thing. Maybe that's just my perception. But it hasn't stopped. Some sqeamish people may think it's gross to see how the ureters squirt urine into the bladder from each kidney, but for some reason, I've come to appreciate that part of how my body works.) So, Dr. Miller gave me two choices for treatment: 1. go back into surgery for another biopsy to make sure there's no tumor underneath the bleeding or, 2. before doing that, treat it as an ulceration and take an antibiotic to see if it heals. I chose the latter because I see no reason for surgery unless there's a bonafide, confirmed tumor. I'll resume taking the antibiotic, nitrofurantoin, for 5 days and have a check up in 8 weeks.
In the meantime, I really am going to make a valiant effort to exercise and eat wholesome, to rebuild my body and replenish the energy I've lost during these last 3 months. Maybe it's time to start training for the 3-Day Walk. Even though I took the day off, work-at-home never ends, as we know. I need to run a few errands and get some things I need. Gotta get it done. As always, be healthy!! Don't just pray. Live healthy!!!!
Blessings, JQ
My Resolve
Several years ago, as I was beginning my journey with BC, my first child, Dalani Joy, was having tests done on abnormal cells in her cervix. I shared with a friend that I had asked God to make my daughter clear of all abnormalities, since her life was just beginning. She deserved the same chance I had to live. If someone had to have cancer, let it be me, instead of her, since I had lived most of my days. Believing that my prayer would be answered, my friend became instantly fearful for me. She said she’d seen it happen recently with another friend. And me, I thought no more of it.
So here I am. Is it an answer to prayer? Is it coincidence? I don’t know. I don’t care. I continue to pray for my daughter’s perfect health, as any mother would do. I pray for my own, as well. I’ve rebuked cancer. I’ve also surrendered myself to the healing process, wherever it leads. I could not survive this leg of the journey if I did not believe that I am cradled by the very Source of Life, the substance of God. The woman my friend referred to wasa couple of years older than I, and seemed healthy in body and mind, until she was told a little over two years ago that a tumor on her kidney was terminal. From the moment she knew, she relinquished her wholeness, gave up her life, and passed away. It took only four months.
The word “cancer” seems to make some people want to die. Or they decide to, anyway. On the other hand, I’m not even saying that it has made me want to fight. Before cancer, I was planning to live. And after, I still am. So I am not focused on whether or not it’s going to beat me. I acknowledge, just as King David did,Lord, my times are in your hands. I am humbled by that; I am, after all human. I can’t stay around here forever. Whether my timesareshorter or longer is not the issue. I still remember that I am cradled by the Source of all life, whether in this body or out of it.
The best thing to come from this is an enhanced appreciation for existence, time, purpose, gifts, and true worship. Here’s what commentator and broadcaster Tony Snow wrote about his cancer in Christianity Today: Through such trials, God bids us to choose: Do we believe, or do we not? Will we be bold enough to love, daring enough to serve, humble enough to submit, and strong enough to acknowledge our limitations? Can we surrender our concern in things that don't matter so that we might devote our remaining days to things that do? Wow!! Even before my diagnosis, he read my mind. P.S.--Lani is all clear.
(Dec 26 - My Favorite Dessert)
I finally got around to baking my sweet potato pie today. All I can say is, a yam is a beautiful thing. It's a gift from God. My SP pie is a delicacy which I enjoy only two or three times a year, because culinary art is as important as musical art is to me. For years, I've tried to create the most superb recipe for it. I tested my best attempt on India Arie's road crew back in March. Her tour manager was quite pleased with my offering and expressed his pleasure with expletives. A few weeks later, I took some to coworkers and one of them said that it had just the right amount of everything. Why didn't I just try it out on my own family? Well, my youngest daughter is the only one of us besides me, who likes yams as much as I do. She lives out-of-state. And I would only bake the pie for someone who would truly appreciate it.
I'm not ready to share the recipe just yet. I can say that considerable care and effort go into making it. The secret of its character is in choosing the perfect yam variety. The secret of its smooth texture is in the minimal use of liquids. The secret of its taste overall is in the way I patiently hand-blend the mixture of complimentary flavors. It is softly and subtly delicious. I love it, so I made one just for me. I just wish I knew who to give the other one to...Hope you had a merry Christmas! =JQ
