Posts Tagged ‘Cancer



31
Dec
09

dying and caring

Yesterday, Adopted Daughter talked about her illness, her thoughts about the immediate future and the way in which she wants to ease into her dying days. It was a sobering talk…not long and not short…just about right for managing to mostly stay in-the-now. We are walking together toward an end that will receive her breath, and for a time will encapsulate mine. I have just commemorated my sister’s passing. I am ready, but for the longing to say: “No…not now, not yet!” But we know it is coming…we cancer people know the signs before others do. We know and quickly learn to savor each day. I hope I am not making it sound easy, because it is not.

Last night I also learned how deeply my Darling Daughter suffers from wounds inflicted so early in her life that she doesn’t have recall. But I do…I was there and I have been waiting for decades for confession and forgiveness. Now that perhaps it may happen in the coming year, I am breathless with hope and fear—fear of overload. Although the river has risen high enough to enter my throat at times, I have not swallowed nor drowned.

Learning Trust: I am becoming a receptacle…a wine skin, if you will, and there’s a strange sense of peace in that. In my best moments, I am a receiver of the Spirit through Christ, and through many others who have gone before. Because of this, I can also be a channel for the Spirit: Legacy – Inheritance.

AD and I are reading Henri Nouwen’s, Our Greatest Gift, A Meditation on Dying and Caring for a class our church will host in a few weeks. She and I will go together and learn how best to walk this walk in the company of Sisters and Brothers. We are both student’s in God’s classroom. Nevertheless, I confess to feeling best when she is here in the house with me, whether sleeping, waking, working, reading—whatever. I have two daughters, one biological and one “adopted.”  One is slowly dying and the other slowly living. The wheel turns and we with it.

24
Dec
09

christmas eve

It is late afternoon on Christmas Eve and all through the house not a person is stirring, not even a cat. The laundry is done and folded with care in hopes that my loved ones will have something to wear.

Ah, the memories of childhood…that advent of wonder. The sacred world begins to turn a new page on the first Sunday of Advent each year. As a child, I didn’t know that  Christmas was more than Santa, presents, family and fun.  I love Advent from start to finish. It’s just Christmas Eve and Christmas Day that bring a lump to my throat. Family, you know.

Yesterday I marked the first year anniversary of my oldest sister’s death from lymphoma. She was a mother/sister and a cancer buddy to me. A week ago, I learned that my adopted daughter’s cancer has returned. She and I are also cancer buddies—she having been diagnosed two months after me in 2006. She’s has three recurrences in three years, while I spent the past three years recovering and achieving remission. The past week has been full of challenges, both painfully sad and amazingly joyous. I am thankful for God’s grace and the love of friends. This small, chosen family of ours is standing in the wind…holding on tight, even as we let go, as we must…as we all eventually must.

I will write more about this as we go. Right now, it’s time make merry. It’s Christmas! And at midnight, even the animals speak!

09
Dec
09

finishing free

This was the day of all days…the big one…the last Rituxan maintenance treatment and I had been alternately looking forward to it and dreading it. Generally speaking, by nightfall, the prior day of these treatments, I turn on auto pilot and sleep-walk to the clinic. Last night was no different except that wintry weather was on its way and could easily cause delay to our 7:00  a.m. appointment in the city. My partner, Big Dawg was raised on a farm and respects weather…I mean respects! So we rose at 4:30 and left the house at 5:20.

The weather hadn’t actually arrived yet, so we were a miserable half hour early, i.e., 6:30 a.m.  The hospital never sleeps, so we could spend the 30 minutes in one of the less than delicious cafes, eating less than delicious morsels of flour, sugar and….and… Must have been something else in those buns, but can’t think what. By 7:00 we were checking in, sitting attentively for our pager to start squawking—the signal that my time had come to enter the portal gates and receive first my blood draw, and then my life-assuring Rituxan. We waited. No squawk was heard. Finally, after about 20 minutes, a technician came out and invited all those souls who would be receiving port-a-cath blood draws to follow her. I have a port-a-cath and I happily followed, thinking that the procedure would be expedited by reason of pager system failure.

No such expedition occurred—at least not for me. The device was clogged and could neither give blood nor receive Rituxan. The draw was done the old-fashioned way and I was sent to the chairs to wait…for what, I wondered? I waited and waited. Finally the technician came out again and beckoned me back to try another approach to unclogging the device. Not working; she asks who is my nurse? Can’t remember her name, so I give her the doctor’s assistant’s name, Ms. SM, and she is paged. Now the real waiting begins. A total of two hours, during which time I begin to slink into cognizance of low-lying fear—apprehensions common to cancer patients, but generally kept under wraps. It’s a bit like unlocking Pandora’s box. Other patients come and go and I am waiting with my uncooperative port, a constant reminder of my dilemma and discomfort. Finally the feeling of not being cared for takes over and I begin to tear up. A flood of cellular memory…times of childhood and beyond when I truly wasn’t cared for. This prompts BD to start the squeaky wheel apparatus. She makes calls to pagers and even speaks to some administration person. I am revived by this, but still the waiting continues.

Finally, the technician comes out and tells us that Ms. SM has been contacted and will page us out in the main waiting room. We trudge off for this area, which by now is overflowing with persons in varying stages of illness. This is discomfiting to me. We wait some more. Then a nurse appears (apparently the pager is not the signifier of choice for me) and asks us to go through the red door. We do and she is no where to be seen. Once again, long story short: we are ushered into a room to wait for Ms. SM. When she arrives, there is no apology or explanation. (This should not be a surprise to anyone reading about my medical experiences.) However, she is all smiles and warmly explains that although a final treatment had been scheduled for today, it isn’t really necessary since I have already had a little more than the two years of protocol treatment. Since Rituxan results are still being gathered world-wide, and since each person responds differently to it as well as to their cancer, I can choose to quit or stay and receive the stuff through a dorsal vein. After verifying with her that she thinks it is six of one half a dozen of the other, learning that my CT scans showed no problem, and my blood work was good, I heartily opted for NO MORE TREATMENT. Yowie, kazowie! I’m through! This means that I won’t have to endure another five or six weeks of recovery—that I can attend holiday parties and  go about my usual business with all my faculties about me.  What joy! I am officially in remission!

I will continue on with quarterly blood work, doctor exams, and periodic (hated) scans, but these will gradually lessen as long as my remission continues. I have follicular, B-cell, non-Hodgkin lymphoma that transformed in 2006 to diffuse, large, B-Cell lymphoma. The latter was wiped out with R-CHOP, the standard of care. I am left with the (indolent)  follicular lymphoma that may very likely cause a ruckus in the future, but I am told that it will not again transform as it did in 2006. Ms. SM outlined the possibilities for the treatment of recurrence. It would not be the R-CHOP and for that I am grateful. (Details of my experience—Dying to Live—can be seen as on my website.) On the other hand, it may never raise it’s disturbing head again…or it may be many years from now when I am older than the old I am now. No one knows what, how or why cancer occurs; how, when or why it recurs. No two persons respond to even the same diagnosis in the same way. Could be called a crap-shoot, I guess. Or is it a weather bell for the new individualized therapies now in the line?

Dr. G popped in to congratulate. He is really a mensch. Never mind the handshake, I had to give him an old fashioned hug.

Epilogue

Last night I asked God to help me be a conduit for my own healing and for BD to be that for me as well. I also asked to BE HEALED and to walk in faith for the healing God has already given and will surely continue to give. I asked this knowing that healing exists on many levels, not just the physical…knowing that healing is a very deep and wondrous thing. Today, I feel I’ve received a gift and a diploma. I am none the worse for wear, and clearly better for the wear. I am thankful and so ready to leave cancer behind. Tomorrow I will make an appointment with the surgeon for the removal of the dysfunctional port-a-cath. Then I will get rid of all the clothes I’ve kept just for port-a-cath infusions. Tonight I will put clean sheets on my bed and spread out my winter weight comforter. I am feeling loved by the Creator and so grateful for his/her Grace.

Grace

08
Dec
09

round two

It was snowing this morning—first snowfall of the season. My appointment with the thyroid doctor wasn’t until 3:00 in the afternoon. Driving in falling, wet snow made me apprehensive. I didn’t need snow and I was beginning to feel low and moody. Tried to get my appointment moved up and couldn’t, so I went out, shoveled the entire driveway, and place my car in an easy to exit position in the garage. While shoveling I became lower yet and sadly, began to feel angry. What about? I didn’t know. Everything.

After shoveling, I hung my wet coat and hat to dry and proceeded to begin my day at the computer. Within minutes, the doctor’s office called to ask me if I could be there in half an hour. Absolutely. Thank you God. No fender-benders for me. I got myself together and set out. The snow stopped falling. The streets were navigable and I arrived 10 minutes early.

I received an ultrasound prior to the visit with the doctor. Back to the waiting room. In another 10 minutes, while I was in a little room waiting for the doctor, my cell phone rang. It was a member of my welcoming church asking about my well-being and telling me I was greatly cared about. I became teary and realized I had been fearful of this visit. I knew about the fear of the oncology visit looming ahead for tomorrow and  the CT scan aftermath still fresh in my mind, but I wasn’t aware of being concerned about the thyroid situation. Maybe it was all one big ball of wax, as they say.

Well, maybe there is something to this look on the bright side thing, or maybe it’s faith…my thyroid blood levels are now normal, the larger tumor is shrinking to an acceptable size, and the smaller one hasn’t grown. Yeah, for the home team! Relief and joy. So glad this doctor chose to treat pharmaceutically rather than surgically. I even got a free sample of my expensive osteoporosis drug! Do I feel sorry for the snit I was in earlier in the morning? Not really. I am so much just a human being. No spiritual giant, I. We do the best we can by the grace of God and s/he does the rest. Joy!

So tomorrow I go to the cancer clinic, learn the results of the CT scan and receive what is expected to be the last lymphoma maintenance treatment of Rituxan. I’m counting on the scan showing no recurrence and the Rituxan experience truly being the last of too many (in my opinion). But…let me not deceive you…regardless of what I say there is still the shadow within that fears and apprehends. Here is where my childhood training of holding the doctor in high regard comes up for air. Let me hear this man of dubious magic say: “You’re doing well, Ms. Called by Name. I see nothing to be concerned about. I’ll see you in 3 months. Have a nice holiday!” Sigh…. I’ll let you know.

06
Dec
09

squeaking through

I had my CT scan yesterday morning, thanks to Ms. L. We arrived early…6:30 AM. After waiting for 28 minutes for someone to appear at the reception desk, my partner was forced to knock rather loudly on the closed door to the nuclear medicine inner sanctum where I (thought) I would/should be entering for my 7:00 appointment. The voice behind the door was annoyed and told her to stop making that noise, whereupon she, BD blurted out with nearly equal impatience our plight. After twice this exchange of early morning annoyance, a sweet young woman emerged and told us that we needed to be in another building and floor for a CT scan as this was PET scan territory. Fine! Ms. L didn’t mention this to me and we had followed directions to the procedure scheduled in error, 3 months prior by Ms. X. Okay! Off we went…quickly.

The correct department for CT scan (computed tomography) was radiology and its like. We filled out forms, which you’d think the hospital would have already filed away for all its patients, but no! No such organization in a behemoth of a hospital. I filled out the form and waited for the buzzer I held in my lap to start quacking. Finally it did and in we went. The young woman escorted me/us inside and shortly the games began.

First off the dressing room. Since I knew the procedure and hadn’t worn anything with metal in it or on it, I was allowed to stay dressed. That was the first achievement of the day. Sitting around in a cotton gown is cold and demoralizing while drinking down 2 quarts of a barium mixture euphemistically called, a smoothie! It is very thick, something like drinkable school paste. It’s definitely not tasty and not worthy a smoothie classification as that is misleadingly one of the many types of fun foods. One is given an hour to drink this substance because it takes an hour to travel from hesitant mouth/throat to the end of the pelvic gut, necessary for a  pelvis/abdomen/chest scan. During this smoothie time an IV needle is inserted in the arm to receive the iodine that is given during the scan for what is term “contrast.”

That is an experience in itself, brothers and sisters! The iodine enters quickly, felt first in the head, very warm to hot, then traveling down the entire body. As it passes, a sense of urinary urgency occurs, but it passes and no accident occurs. It is a very strange sensation—hot like a sunburn, but from the inside.

Something strange happened this time as I lay in the “tunnel” waiting for the iodine infusion. I felt the oneness with God and it was another point of light, something to write home about…or keep to myself…

The scan itself takes only 5 or 6 minutes. The prep is the nasty and the afterward even nastier, as the barium must be evacuated. This process varies with the individual. For me at my age and with my sensitive digestive system, it was a nightmare with sleep a blessed relief afterward. I felt weak and sickly all day long and went to bed early. Am I sensitive because I am or because I’m old and the parts are wearing out? I don’t know, but I am glad to be feeling better this morning, and on my way to Advent 2 at my church…seeing all the people and praising God for today and the hope for tomorrow.

So that’s how it is. If the scan says AOK I won’t need another for a year…maybe more. I will rejoice. It’s never pleasant to relive the cancer journey, as I did yesterday. Today is Advent 2! The blessings of the day to you!

04
Dec
09

plowing through obstacle paths

Today, I am blown about like a dry leaf by the hospital system that hosts the cancer clinic where I am a patient. I like my oncologist, Dr. G very much. He is kind and compassionate, and a specialist in the varieties of lymphoma, a blood cancer with some 30+ varieties. I like his immediate staff. But there is one person, Ms. X, who does not like me and she has today caused a confusion that has my household, Dr. G’s staff and the Nuclear Medicine department in an unnecessary flurry of activity to straighten things out. I don’t know why this person takes a dislike to me, but I am told I am not the only patient on her dis-list. Disconcerting…even more so if I were really sick now, as I was 3 years ago, when everyone’s compassion was a cup of cool water for me.

Why Ms. X continues to hold her job is a mystery to me, but Ms. L from Nuclear Medicine has taken on the case and saved the day. Yeah for the stalwart ones! Thank you Ms. L. I didn’t want to have to postpone this scan and go through the anticipation all over again. Blessings on your day Ms. L.

This brings me to considerations of Kingdom vs. kingdoms. Nothing like this would happen if egos didn’t run the world…yes, even in the church!  So I’ll share with you my Advent reading this morning. It comes from a little book by Richard Rohr called, Preparing for Christmas—Daily meditation for Advent. Today’s reading is based on  Isaiah 29:17-24; Matthew 9:27-31

And those who err in spirit will come to understanding, and those who grumble will accept instruction. Isa.29:24

Easy to see where my alliance for proper health care in this country lies: let’s put the CARE back in Health care! Some younger folk might be surprised to know that there was a time when hospitals were not completely bottom-line-profit oriented, when insurance and pharmaceutical companies were not bed-fellows, and when doctors actually came to a sick person’s home and got to know the family and the circumstances. Not every new thing that comes out of the can  is progress.

28
Oct
09

catalyst or cadillac

Not long ago  a member of the Menno Neighbors listserv asked me if I would attend the yearly meeting in New York City. I replied that I wouldn’t be going and gave several reasons for my decision. The first had to do with being an intuitive/heart person and not much of a strategist. The rest of the reasons had to do with scheduling, which I now, in sounder mind, see that I have muddled up in the same fashion I managed to make myself a year older than I am (Oct. 20, 09 posting).

My MN friend replied that non-linear types are needed as well and why not lend a hand? As the day wore on and more little promptings crept in from other corners, I began to pay attention and felt a tiny bit chastised. So I shared this with my partner, BD and friend, AD at dinner and got more admonition to attend. This time the tone of it was inescapably reasoned and direct. More chastening. When the four winds bring the same or similar message to me, this is  how I know the Lord is trying to get my attention. Well, their urging and AD’s offer to go along with me put my intuition into drive and I set about checking on the details of this event, my own calendar and so on. As I said, the calendar problem had been my chemobrain/aging  folly. Little by little the whole thing took shape and the NY meeting is now on my calendar. I will be going despite my dislike of traveling anywhere that prevents me from sleeping in my own bed and bedroom! I am grateful to be going with AD and not completely alone. But I have the feeling that eventually God will send me somewhere on my own and I will have to deal with that…but not this time. Whew!

My hesitation about this meeting…that I wouldn’t have anything to contribute beyond my own passionate nature—that I would not be able to back up anything I said with facts and resources that the thinking/mind people generally want to hear was silenced by the Holy Spirit who whispered: Fear not…I have called you by name…the deep waters shall not overwhelm you…  I heard that in my memory and in my soul. It was a call to once again step out beyond my comfort level and trust that I will be given all that I need to be there in a helpful way. I was reminded in yet a different light that  God so often endows the least with much to carry forward. It is a good place to be as long as one doesn’t take God’s gifts as one’s own doing—always a pitfall.

I am reminded of an encounter I had with a healer in 2007, several months after my last chemotherapy cycle, who told me clearly that I was a catalyst…that was my place in life, to be a catalyst. We deferred to saying Cadillac instead, being somewhat uncomfortable with the fallout from catalytic action, but apparently this was prophecy because that is pretty much all I am called to be, as I have no great solutions of my own to the various problems currently making their way through my life. Some readers will recall the  extraordinary battle for membership in my former congregation, which ended in pain and agony for us and many others as well. Since my encounter with the Divine during my cancer treatment, I have gone through many high rivers, They have hurt and agonized me, but and none have overcome me. In fact, God has drawn nearer and I sometimes wonder if I am the same person I knew for most of my life. Chemo changes your DNA; God changes your life and the Spirit finds a home within.

So…catalyst is good. I can live comfortably with that, because it’s like yeast…biblical yeast. Last night, in my Sacred Space prayer book, I read

What is the kingdom of God like? And to what should I compare it? It is like a mustard seed…  (Luke 13:18-21)

The meditation following suggests another image of the Kingdom:

…yeast in dough, working for good even when unseen. Lord, I feel safer as yeast, working invisibly and unnoticed. I do not look to see results, just to know that I am an active part of your kingdom.

Yeast is a catalyst. I am content to be just that and leave the fine tuning to those who do it best.

14
Oct
09

on giving heart and soul

Last Sunday, October 11,  Adopted Daughter transferred her membership from the  church-that-wouldn’t-have-us to the  little-church-that-could and does want us—where we are welcomed openly. We have only been there 18 weeks, but AD knew immediately that this was the place for her. She is a cancer survivor with four recurrences in three years. Her life is lived everyday in the immediate now, giving everything she has away wherever it is needed…financially and personally. She is Florence Nightingale, Mother Theresa, financial wizard, business consultant, friend and much more. AD gives from her heart, sometimes at peril to her fragile health, but this giving is important to her. Although she is hopeful, she does not count on next week or next year. She wants to give all she has and make a difference in the world. When she overdoes it, as is sometimes the case, I speak to her as adopted mom, but  she generally does not heed my advice despite my greater age and familiarity with cancer recovery. I take her as she is and pray she has many more years to keep giving it all away. I also thank God for her presence in my life.

Sell all you have and give to the poor. Then come and follow me.  (Matthew 19: 16-22)

16Another day, a man stopped Jesus and asked, “Teacher, what good thing must I do to get eternal life?” 17Jesus said, “Why do you question me about what’s good? God is the One who is good. If you want to enter the life of God, just do what he tells you.” 18-19The man asked, “What in particular? “Jesus said, “Don’t murder, don’t commit adultery, don’t steal, don’t lie, honor your father and mother, and love your neighbor as you do yourself.” 20The young man said, “I’ve done all that. What’s left?” 21“If you want to give it all you’ve got,” Jesus replied, “go sell your possessions; give everything to the poor. All your wealth will then be in heaven. Then come follow me.”  22That was the last thing the young man expected to hear. And so, crest-fallen, he walked away. He was holding on tight to a lot of things, and he couldn’t bear to let go.

Ginko leaves

23
Sep
09

blessings and prayer

Yesterday my partner and I marked our 33rd anniversary together. We have the pleasure of sharing this date with adopted daughter who turned 48. She has just begun her second cancer remission in three years and hopes to reach retirement at 50, and have a few extra years for fun. We had a lot to celebrate, but it was just a quiet dinner out. We have all learned that life is quite fragile, not to be taken for granted and lived as well as possible each and every day, whether in joy or sadness.

Just before AD’s birthday, she learned that a friend in her cancer support group had died despite the heroic efforts of oncology to save her and her own weakened, body’s desire to be saved. She was 52…a wife, a mother, an activist.  News of death among this group is near to shattering for them and for us as well. We are sobered by the fragility of life and the knowledge that time is as limited as it is infinite. Our evening was an affirmation rather than a jubilation. We breathed quiet prayers.

The night before I had one of those sleepless in the suburbs challenges and had written about it, posted it, then deleted it the next day. It was not entirely appropriate for public consumption. But I learned something about myself through it…about all that I want to do with the rest of my life despite the ebbing of energy as I age, and how anxious I still can get about interfaces with people I don’t yet know very well. The abusive experiences of the past year have left me feeling shyer than I’d like in my new congregation and reticent to make new connections. I have a little card that came home with me from the  Mennonite Conference in July. It says:

Become the leader you are called to be.

Well, what do you suppose that means? I haven’t figured it out yet, but there really was no reason for me to have seen this message. It just happened to be left at the table by someone who’d sat there before I’d come to the session. I don’t know if leadership is one of my gifts or not. I never thought it was, but if it is, I’ll have to grow into it. And if I grow into it, I hope to have far fewer sleepless in the suburbs nights. I gratefully accept prayers.

Hummingbird

26
Jun
09

Traveling on

Two days ago I went to the city for another lymphoma, maintenance treatment. Being back in that environment, having chemicals dripping into my body to ensure a longer remission is a bit of a catch-22. Takes a few days to recover and about a week to forget about it until the next round. Happily, there will be only two more of them and then I will be a member in good standing of the Full Remission Club. Notice I didn’t say Full Cure Club. There is no real cure for cancer, there is only remission and that allows cancer to be considered a “chronic disease.” (Love that spin..) The war on cancer, begun decades ago by President Nixon, hasn’t been particularly  successful…more like a “mission accomplished” hoo-ha. Nevertheless, I am still standing and determined to make the most of whatever time is mine to love, learn, struggle, stumble, laugh, eat, dance, sing, or suffer through.

Suffer? Did someone mention suffering? Hmm, something so near, but not dear to my heart these past many, many months. How does one embrace suffering when it comes as a result of the innocent love of church and friendships? By Grace, that’s how, purely by grace, that mysterious unquantifiable essence of the Spirit of God.

My dear friend, ordinary (mostly) has referred to the struggles and pain in his congregation. I know a great deal about those struggles as they revolved around me and my partner of 32+ years. I will never be a fan of suffering, but I can tell you that the payoff is spiritually transformative and worth it in the end. It’s just the beginning and middle that are problematic. Traveling through difficulties and outright pain is helped enormously by prayer, supplication and plain old hanging on by the finger nails. (Cats do this very well on window screens…)

In bad times I have envisioned being weightless in a dark universe where I am alone, with God beneath me, like a transparent hammock holding me aloft. I have had  many dark paths, dark nights, dark days during the struggles in the congregation that I loved. Grace is there like a little flame lighting each step. This year I came to understand that faith is not about strength of character or certainty of outcome, i.e., being sure you will get what you ask for. It is about walking toward God when I don’t see clearly, trusting as best I can (imperfectly) and knowing mother/father God hears me when all I can say is “Help me.”

Jesus, help us live in peace from our blindness set us free.

Fill us with your healing love. Help us live in Unity.

I’m walking the bridge, following the light, and leaving no footprints.




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