Not Down Or Out

It could be worse. I might not be laughing.

Thank You!

Today is the sixth anniversary of my cancer surgery. I mailed a note to my oncologist yesterday to thank her for first off re-staging me from a stage III to a stage 1 with complications. When you go from having a 45% chance of being here in five years to something more like 80%, it changes your attitude. She was a kind woman, very patient, good at explaining, and she gave me good advice about taking prophylactic steps to keep cancer from returning.

The treatments were tough. I still think about my horrible Christmas in the Hospital when I feared I might die of the infection I got at the end of my six rounds of chemotherapy and weeks of radiation. I am happy that it was not necessary that I also go through the internal radiation the radiologist originally recommended. I think that would have tested even a positive attitude.

I am writing to thank you, too!

I got through the surgery, treatment, and recovery because of family and friends for whom I remain eternally grateful. My mom, my sister Kathy, her husband Jeff, brother Danny, his wife Lisa, nieces Maureen and Lisa, Aunt Joan, cousins Susie, Jerry, Gail, Al, Michael, Alice, Pam, and Courtney were there for me. My sister Kathy came out for a month to take care of me while I recovered from treatment. My brother Danny flew out to take me to chemotherapy. So did Maureen and her now husband Justin. Susie listened to all of the phone calls in which I weighed treatment options and worried about the side effects they brought. Alice and Michael sent me the cool yukele stylings that cannot help but make a person smile. I received the benefit of many calls and hugs, and prayers. And it is not lost on me that many of my family members had already seen our beloved Steve through years of cancer treatments that did not end as well as mine did. Steve was so strong. He made all of us stronger because of how he was such a loving man through trials that I can still only imagine.

Barb was there at the hospital with me after my diagnosis and she was with me on the day I met my oncologist and heard her advice and words of hope that things might not be as bad as I had feared. She took me to chemotherapy treatments and was with me for some of the dark days of treatment. She has earned her place as my best friend forever by sitting beside me and letting me talk through my reactions to some of the life-changing events I experienced. She knows I value her friendship and love her.

I have wonderful friends. Dominique came to see me in the hospital when no one else could. She brought me a toothbrush, toothpaste, and a comb when I was in so much pain that I thought I might die of my infection. It was the first time in days that I felt human. She brought her little machine that applied some kind of bio-feedback to my many scars and burns. She gave me probiotics that helped me recover from the chemotherapy. She was a great source of comfort that life would get better.

I am grateful to Mary who sent me money to have my apartment cleaned while I went through treatment. Like Susie, Alice, Barb, and Dominique, she was one of those rare people who could talk with me about the enormity of a treatment plan that leaves the subject in a scorched earth condition. My oncologist said that there were two types of patients; those who don’t want to hear it and those who want to talk about every aspect of it. We know where I fit in.

Roberta, how many times have you come to my aid with your thoughtful calls, emails, visits, and gifts of good cheer? After you and Mary recently showed up to sort out my apartment after I survived the May 2017 flesh-eating infection, I think it is possible to have both cancer and a flesh-eating infection and still be the luckiest person I know.

Paul and Gladys, you were always dropping me a note or picking up the phone to make a call. Paul, I still remember when you offered me some help with medical bills. That never became necessary, but I still remember thinking what a nice crazy that was. You are a lot of fun at a party! You bring it with you whereever you go.

I am grateful for Sue who came to visit me while I recuperated. She can sit down in a chair and take your mind to a far better place and leave you smiling. Great medicine.

I had some powerful people praying for me. Kathy had her group in Maryland. Kim Marie was on the job in Florida. Joelle did her share of heavy lifting on prayer as did all of my mom’s friends in EGV (Irma, Dee, Maggie, Jack, and Ollie). So did Rick and Karen. Diane, I feel I have known you forever and am so grateful to have leaned on your faith, too. Gladys and her novenas came through for me!

It hurt when the law school for which I worked terminated me for being diagnosed with cancer. But I got a lot of support from people there. I am grateful to Moses for not doing the same. Some of my favoriate students were people I met while going through the tough times of dealing with cancer in my life: Joelle, Millie, Joy, Josh, Tracey, Dayna, Djenane, Brian, Kim (and her mom), Russ, Anne, and Karen, to name just a few. The people at my other school, especially Carrie and Chanita, also were patient and supportive. Their support meant so much to me. That’s a fantastic group of people.

I have to thank the friends I made while going through treatment, too. Rodney, our talks and lunches were a blessed distraction from the every day grind of life. You made me laugh. Chicken and waffles may not be my thing, but we’ll always have chicken with quinoa, the enchiladas and brownie pie at Chilis, and the Greek buffet at Reza’s and the quest for cheap parking to remind us of our long conversations about things that matter.

So many people sent their good will from afar: my Aunt Arlene, friends Coundy, Steve, and Mark. Some of my former students wrote letters to the law school to protest my treatment. I feel so lucky to have so many wonderful people in my life. Lt. Alix even sent me her medal she received for being a Hometown Hero for active military service! Like I did anything to justify that by doing my best to get well. I never even met that brave and wonderful woman. Like heroes do, she would not even acknowledge my gratitude for her service or her undeserved and gracious gift to me.

I “met” lots of people dealing with cancer while I did through blogging. Mike is still alive–I think, but hasn’t been well enough to communicate for a long, long time. I pray for him, his daughter Anna, wife, and family. Laura Lynn died in October of 2016. I cry whenever I think of her incredible personality. We cannot say we ever beat cancer, can we? Not after we see some of the finest people we know succumb to it while young and with so much to live for. I honor the many no longer here and am grateful to see others still online when I return to my blog. Some of the bloggers who kept me going were:
Mike
Laura Lynn
Sheri de Grom
Knot Telling
YAPCab
helensamia
Tammy Carmona
liseybendy
bjsscribbles
oneanna65
Imarieallen
cindy knoke
Ingebird Scott
myeyesareuphere
tonitappcoutts
Dglassme
allbuthomeless
zippyrose
Cancer in my Thirties
banjogrrldiaries
ozhiggins
Puhili
Healing Eyes
doublewhirler
troutledge
beckyjmonroe
shelleydmason
mytholmroydmama
cowboylawyer
kymlucas
Carolyn O’Neal
iGameMom
thinkreadcook
lifesmanylesson
Denise McCroskey
Fierce is the New Pink
hermyleen
hypersensationalism

I could go on, but if it takes a village, I had one, an amazing one. And I remain, thanks to all of you and all of them, doing well!

Walking Through the Pain

In the aftermath of my surgeries I remained in the intensive care unit with the nurses who became my support network and inspiration during treatment and recovery. Because I spent so long in intensive care at a relatively new suburban hospital, I spent the Memorial Day weekend and another weekend in the unit. There were several weekend days when I was the only patient in the unit. I had the experience of spending more than one twelve-hour shift with some of the nurses. On their return from days off, several would stop in to see how I was doing.

I remain very grateful for their excellent care. They fought for me when I lacked the strength to fight for myself. I promised them that I would return to express my gratitude after my discharge, and I did not wait too long to do that. I packed a bag of gifts for them and delivered it one morning. I was not allowed to enter the unit, but one of the nurses, Amy, and the hospital’s chaplain, came out to accept the gift. Amy and the chaplain remembered me. They hugged me and wished me well. I am guessing most people put experiences like mine behind them and do not return. I intend to come back again to let these wonderful nurses know that their work does more than save lives. They give their patients hope, peace, and medicine that does not come from a pharmacy.

Here’s the note I wrote to my nurses:

July 8, 2017 

Greetings to the outstanding nurses and staff in the Holy Cross Germantown Hospital Intensive Care Unit: 

It has now been a little over a month since I was discharged from your care after successful resolution of a flesh-eating infection and treatment for related conditions. I have been busy with home healthcare nurses, my follow-up appointments with Doctors Sailon and Jacobs, and other doctors.

I am happy to report that healing is going well. I have a pinched nerve in my neck for which I am being treated. I am under care for diabetes now, but I am doing well.

There are no words that can sufficiently express my gratitude for the care I received while in your unit. I am dropping off treats today, but they also cannot represent the emotions I feel. Your compassionate care during a time when I might have died and the positive outcome for my health and well-being are gifts I do not take for granted. Thanks to you and the medical professionals at Holy Cross Germantown, I have another chance at life. 

If I have forgotten anyone in the following list, I apologize for my faulty memory. In my sixteen days in the hospital, I underwent four surgeries and many challenges. But there was always a friendly voice and hand to help me. 

Shak: You were with me during some of the worst hours of my life. I still wake some mornings and recall how, after one of my surgeries, when I was coming out of anesthesia, I saw you standing there looking concerned for me, and it seemed as if you were some kind of squadron leader there to fight for me when I was unable to do it for myself. Bless you, that image is a source of great comfort.

Kwame: You encouraged me to walk and I did it. I still smile when I think of your coaching to face the day’s challenges. My motto in meeting those challenges was, if I have to walk through pain to make it out of here, then I will walk through that door. I did. Thank you for encouraging me when spirits were low.

Sophie: There was a night during my stay when I was afraid and in quite a bit of pain. Your voice of comfort soothed those concerns and still represents for me reassurance that things would be okay if I hung on.

Vivienne: How many times did you crack ice packs for me? I think you singlehandedly saved me from sweating into a pile of jelly with your patience and energy and caring on several nights when I could not seem to find relief.

Melanie: I think of you as the Martha Stewart of Holy Cross Germantown. If you recall, my room ended up being filled with chairs and commodes. I was the Goldilocks of hospital equipment. Some were too big, some too small, and some in need of repair. Most of the time, this equipment would crowd the walls so everyone could pass through and do their work, but, when you were my nurse, you would rearrange and make everything fit better and look better. It felt like it was going to be a good day as soon as you walked in during rounds to say hello and write your name on the board.

Yulie: You cared for me on so many occasions. I would get to the point in which I was exhausted, sweaty, and seemingly oozing with infection and you would come on duty, get me all cleaned up and tuck me back into that horrid bariatric bed, and I finally would sleep. You fought the bed company for me on a night when nothing else was going well and you got me installed into a better bed. I am so grateful that you never gave up in the battle to get me what I needed to recover.

Thinh: I had some tough reactions to some meds and you were there to keep me calm and track down a doctor to handle the matter in the middle of the night. You were there several nights and were so calm and reassuring that I made it past the rough situations. Thank you.

Rachel and Rachael: We were together through one of those nights when my bariatric bed proved to be a disaster. Not only did you persevere in the face of the challenges of keeping me comfortable, but you tackled that bed of torture and tried to get it to work. I also remember that night because of our wonderful talk about taking writing classes in pursuit of a degree and finding it tough to reconcile the writing teacher’s expectations with the reality of how intensive care nurses communicate with patients and others. The two modes of communication are not the same, and finding one challenging does not mean you are not an expert at communication. I learned from you and others in the unit that you have your own effective tools for saying what you need to in stressful circumstances. A soft touch to the face sometimes alerted me to the presence of my nurse without the need for any words. I learned that many of you discuss the outflow of stuff from patients’ bodies like strange foods’ consistencies. It works for you!  

In my package there is a bag with a book about how many schools teach history using books that do not tell the true story of how we treated indigenous populations. I still remember how your little boy was challenged at school for questioning the history books. I applaud your support of him. I can tell you that, as a lawyer, mine is one of many professions, in addition to your own, that value people who take on assumptions and test them. 

Lucy and Patty: Often stepping in to help me navigate in and out of bed. Tracking down a prescription. Helping to figure out what to do with the bariatric bed from hell. Bringing me more ice packs. Checking in on the way in or out of the shift. Thank you!

Holly: My last day I ended up wrapped in warm blankets from head-to-toe. Despite needing dozens of ice packs during my stay, the couple of hours you bundled me in warmth were a great source of comfort. I was about to leave and face recovery largely on my own at home, but I cherish the memory of my warm and fuzzy send-off. I felt ready. Thanks for that.

There are so many people to thank. My memory fails me at times as I try to remember specific days and shifts, but the following nurses and supervisors helped me, sometimes just answering my call button, sometimes for a shift, sometimes waving or cheering me on: Amy, Aurora, Bernadette, Christina, Christianne, Jericho, Julie, Sharon, Veronique, and Wooley. Michelle, you took my blood for glucose testing and were a ray of sunshine with your smile. I know you turn 21 in October. I hope you have that celebration (safe but fun) that we discussed—even if your friends are too young to go along.

I also have included in this package an envelope for Ms. Ermine, the woman who often cleaned my room. Please pass it on to her. I will never forget her many kind words of encouragement and advice. She stood in the hallway the first time I was able to walk that far and she cheered me on. What a fantastic woman she is! I am grateful for the opportunity to meet her during my stay.

Thank you again for all of your skill, talent, compassion, and care. I hope to put the extra time I will have on earth to good work thanks to you.

Hugs,

Cheryl

As my letter indicates, my nurses saw me through some tough times. I will write more about them and some of the challengs they helped me face in future posts. Thanks to them and the rest of my medical team, I was able to walk through my pain and leave the hospital to continue my recovery at home.

 

 

 

That Which Does Not Kill Me, Makes Me Stronger

As I was saying in my last post, the E.R. doctor identified my condition as a flesh-eating infection. It was not MRSA, thank goodness. But it was rare and life threatening. My memories of the first few days of my hospitalization are fuzzy. I was in great pain. I was being examined and tested and new diagnoses were coming in swiftly. I suddenly was diagnosed with diabetes. There was a chicken/egg aspect to it. Had my blood sugar gone out of whack due to the infection or had it been off the charts before the infection and made me more vulnerable to the infection? My blood pressure was climbing. Was this due to the stress I was under or was it a precursor to the infection? It was noted that the infection’s course seemed swift–even swifter than might be expected in the “normal” course of an abnormal condition. The nurses were hanging bags of fluids as fast as they could. I felt like I was one of those balloons at the Macy’s Thanksgiving Parade. Every inch of my skin seemed to be stretched as taut as it could be stretched.

I was prepped for surgery and do recall giving instructions that my sister had my power of attorney for healthcare purposes. She could make decisions for me if I was unable to make them.

My mom lives with me now. She is 80 years old. She had to move in with my sister and brother-in-law. We were all feeling upended and shaken by the situation. From my hospital bed, I could see a patch of sky that seemed so far away. Family members stood by the window and whispered softly. I handed over all of my belongings to my sister and wondered if we would ever see each other again. No one could say what the surgeons would find.

When the surgical team came for me, I was praying. How many times can we pray for someone to save us? I have decided that we can do it as many times as we need saving. It was icy cold in the operating room. The nurses and anesthesiologist were calm and friendly. They had questions for me. Could I help them transfer me from the transport cart to the operating table? When had I last taken water by mouth? Could I place my left arm just so on a board for that purpose? Did I have sleep apnea? Did I snore?

The temperature in the room felt good on my fevered flesh. I felt the first needle glide into the skin on my arm and I fell asleep.

That was the first of four abdominal surgeries. It was a protracted process to remove the infection. My surgeon was a plastic surgeon. He removed flesh from my right side to the left.  I was not closed up between surgeries. Instead, as I understand it, the opening that went from side to side was lined with cloth. I was bound up tightly and attached to a vacuum that kept drawing out blood and infection from the area. I was reopened as necessary. My wound needed debriding in much the same way as a burn might require it. Infected tissue, dead tissue, and other flesh had to be removed as it was identified.  The drain that was installed on me drew a pinkish jelly from me. I had a catheter. And, on that first night, after my surgery, I was left intubated in case I had to be rushed back to surgery.

My sister was unaware of that fact. She says she understood that I was being taken to the intensive care unit and the tube would be removed. But it was not. My first recollection post-surgery was that I was restrained at the wrists and ankles. I felt the tube in my throat. I panicked. I wanted to speak, but I could not. I was in a room with a sliding glass door, which was left open.

I heard things. I saw things out of the corner of my eye. I won’t trouble you with some of my memories, but they were disturbing. When I did get a nurse’s attention, she said to someone that I was receiving propofol. I could not be aware of my surroundings. I responded by struggling. I then heard someone say I was hysterical. I managed to yank my hand out of one restraint. I threw up fluid from my throat and had the unpleasant experience of having it coat my face and slide up my cheeks to my eyes. I did not understand that I was intubated. I remained panicked and wanted to speak out about things I was experiencing. Instead, I was drugged again to still my struggles.

It was a long night. I understand that my second operation took place in the morning without my awareness of it taking place.

I was more afraid during that long night than I was before I went in for surgery. In my hours of sleep or drugged awareness, I was in a black room with a black bird. The bird was huge, far bigger than I was, so not real. She had a small, beady eye the color of a raspberry. Her dark wings also were trimmed with narrow bands of the same color. She was regal in the darkness, but cruel, too. She pecked at my body with a long, narrow, black beak that tore at my flesh. I felt every piercing and called out to God for mercy.

Death seemed preferable to this punishment. I know I begged to be taken from the place in which I found myself. I cannot recall feeling any misgivings about that cry for the release death would represent. I cannot recall thinking of my family or my friends or my students or my work. I remember thinking that death would mean peace and escape from that pain. So . . . I do not think I imagined myself to be in HELL. I was suffering in this world and wanted to depart it.

We do not always get what we want.

After much suffering and even more begging for release, the bird disappeared, the room went dark, and something that looked like a turquoise and gold LP record spun into the room. The turquoise and gold pattern on the record resembled the symbol for yin and yang. There were words where the grooves would be in a record. I could not read them from my vantage point, but I could see the curves and lines of the letters. Then the record started to turn and the words became images and sounds and I saw events that had yet to occur. I saw myself awakening in a hospital bed. I heard my nurse saying she was logging onto the computer beside my bed using a specific password that was the same as the password of the nurse from the preceding shift–except she was going to add a two at the end. I saw myself learning to walk again. I saw myself wearing a hospital gown that was too big and yet managed not to cover me. I saw myself trying to work and finding it tough to focus visually and mentally. Some of the things I saw have not yet happened. But some of them have. I am finding it tough to recall some of what I saw as time goes by. Today I am almost three months from the start of my odyssey.

As the record came to an end a huge voice boomed out into the darkness: “Live more LIFE!”

I think it was God.

I woke up to see a nurse I recalled from what must have been intensive care on the night after my first surgery. In that first blinking assault of light it seemed that she was dressed in a uniform like the one Rosemary Clooney wore when she danced with Bing Crosby, Danny Kaye, and Vera-Ellen in White Christmas to the tune, “Hey, I Wish I Was Back in the Army.” Instead of being blue, it was khaki and she had an aviator’s white silk scarf around her neck.  When she moved her shoulders, I could see her wings. She was the yang to the dark bird’s yin.

In another instant I was able to focus and see her as she is–she is a nurse and not a bird. I was awake. I did not feel much like living, but I was alive.

I spent sixteen days in intensive care. I would later meet my infectious disease specialist, a woman of few words, who told me I had been a few hours “from the dustbin.” She told me that nothing made her happy. But my surgeon had made her happy. He made her very happy because he did everything the right way. She said I was lucky because Plan B would have been hospice care until death.

I cannot tell you how many antibiotics she prescribed for me. She ordered repeated blood tests and measured the profusion of infections in my blood. As I understand it, flesh-eating diseases like mine come from “common” infections like strep (usually strep), staph, or e-coli. These infections surround us. They are on our skin. But they seldom inhabit us without being let in, and a healthy immune system usually fights such infections off. In the case of the disease I had, that red spot on my abdomen had been a door left ajar. One of those “ordinary” infections was opportunistic. It crept in and took hold. She never did tell me which infection I had. I have the impression I had more than one. As my medical team continued to work on me there were two more surgeries and a last debriding.

Thanks to the brilliance of my doctors, I was declared infection-free by my surgeon on May 30. The infectious disease doctor concurred and took me off of antibiotics about two days later.

There is more story to tell, and I will tell it here. But for now I will say this: The infectious disease doctor has a working hypothesis that the disease entered at my abdomen where the scar from my hysterectomy was because the flesh there had figuratively become like a sponge and not like a solid. Chemotherapy and radiation might have converted what was fat into what was food for the infection. I had an infection that did not feed on air. It fed on bacteria. And the infected flesh bred bacteria and infection. So, in a way, cancer treatment (that which did not kill me) made me weaker and more vulnerable.

However, my infection spread through fat. It never spread beyond it. Unlike many who have contracted such an infection and were not treated in time, I did not die. Unlike many who have had the infection reach a body organ or a limb, mine did not spread and I will not suffer a permanent disability. I have seen different statistics since I got out of the hospital. Some speculate there are fewer than a thousand cases diagnosed each year. Untreated, the disease is fatal. Due to the difficulties of identifying the disease, I have seen statistics showing as many as 40% of cases end in death and another 40% of cases end with permanent disability. The flesh, tissue, or organs that becomes infected cannot be cured. It has to be removed. I appear to be in the 20% of cases that end well. So the porous fat that made me weaker ended up saving me. Had it not been there for the infection to consume, I might have been a fatality or a casualty of the infection.

That which did not kill me made me strong enough to survive. It appears I will have an opportunity to live more life.

 

 

What Does Not Kill Me . . . .

I recently had a five-year gynecological examination that found no evidence my endometrial cancer had returned. It was scary. I saw a new doctor in a new state and had insurance–for a change. I gave her a summary of my medical care from 2011. She performed a visual examination and took a pap smear. She told me that I should hear from her in about two weeks, if the tests showed any abnormality. If I heard nothing, then I had nothing to fear.

Of course I held my breath when she said that. I would face my fears again and again every day for those two weeks. On the last of those days, I felt brave and confident that I had survived for the five years that would reinforce my status as a survivor. Then I got a voicemail message that scared me. The doctor said that my test result was abnormal. She paused. It was a long pause.

My pulse raced. I heard my tinnitus rise in volume. I broke out in an oily sweat that wet the back of my neck in an instant. Cancer. It can return. It can come in a different form. It can lay waste to dreams and disturb peace of mind. It has left scars on my body and on my psyche. I knew I was strong enough to face whatever news was coming. That did not change my fear. It heightened it. I very much wanted to learn that I was okay.

I do not think of myself as having beaten cancer. I survive it. If it was an enemy that fought with me, I would have a battle with it. However, cancer is not like other enemies. It does not play fair. It hides. It uses tools you think are your own like your native strength (if it can), leaving you depleted for the next round of treatment.

I am grateful to God for my ongoing life. But I do not believe I was saved by my good behavior any more than I believe cancer is a punishment for bad behavior. It is just cancer–a disease for which we have treatments but not many cures. In my experience with cancer, I have been operated upon. Organs were removed. I have been subjected to radiation that burned what was a likely point for cancer to spread. I have been injected with chemotherapy drugs that scorched my cells in unforgettable ways. I have been treated, not cured. A cure would have left me well, not recovering with fingers crossed and my eyes focused on a calendar that seemed to pass before me very slowly. If I believed in earning my time here through good acts, I would be judging those who also receive a diagnosis of cancer and see time run out before it should. They no more deserve cancer than I did.

My doctor finally finished her message by saying that the results were abnormal because my cervix was removed back in 2011. She said I no longer needed to have this test. I can put behind me the fear that the cancer will return . . . there.

It still makes my temples pound to think about how I reacted to that long pause. Instead of relief when it ended, I felt something closer to grief. Surviving for five plus years what you fear very much is tough work. I cannot think of any comparable experience in my life. Sometime in the space of five and a half years from diagnosis to that physical exam I lost things I cannot regain–illusions, confidence, opportunities, resources, and more. I gained things, too, like friends’ and family’s support, perspective on what is important in life, and more.

I still had to go for a mammogram. No evidence of cancer there. I haven’t yet gone for my colonoscopy. Something else came up before I could make that appointment.

On May 15, I felt a small bump on my abdomen. It was red and painful. I made an appointment to see a doctor on the morning of May 17. Then I went back to the task that consumed me at the time. I read final exams of my law students and concluded grading my first-year law students’ papers. On May 16 I woke and realized that my pain was far worse than it was only a day earlier. Bands of pain seemed to cross from the right side of my body to the midline. I went to a meeting of our legal research and writing faculty at which we were going to discuss candidates for our law fellow program. I told my colleagues that I would appreciate our discussing my students early because, at the conclusion of the meeting, I would either drive home or to a hospital emergency room.

Traffic was heavy. I ended up going home and going right to bed. I gulped down some cold water and fell into a fitful sleep. When I woke, I felt hot, but I could not find my thermometer. I was not sure if I had a fever. I only knew that my small, red bump hurt like hell. I went back to bed.

At 5:30 the next morning the pain went from that single red bump to the left side of my abdomen. I knew something was very wrong, but I had no idea what it was that made me feel so overwhelmed by pain.

I called my sister and asked her to take me to the emergency room. I had a doctor’s appointment for later that morning, but a six-hour wait seemed interminable. We drove to the hospital.

The resident examined me and was stumped. She thought it might be advisable to send me home to let the red bump “fester” so there would be something to lance. I could not imagine waiting for my condition to worsen. It felt like it could not get much worse.

I am grateful that the E.R. doctor on duty came to evaluate me before any decision could be made. He recognized what the resident did not. I had a flesh-eating infection that already was advanced enough to threaten my life. He said he wanted to admit me, begin pushing antibiotics, and get me in front of a surgeon.

I had to ask myself whether I had survived cancer to die from a bizarre infection. At that point, I knew of only one other person who had ever had such an infection. He is a friend of my brother. He spent time in a coma, had a chunk of his chest removed to keep the infection from spreading to his heart, and had to go through kidney dialysis for some time after doctors halted the spread of his infection. He was lucky. Many who have had a flesh-eating infection have died. I had to wonder whether I could survive yet another dangerous condition. Had cancer left me strong enough to resist a deadly infection?

 

 

 

 

 

 

I Can Hear You Now

One of the several lingering effects of chemotherapy appears to be tinnitus. Tinnitus is that ringing or buzzing in the ears that some suffer for various reasons. My tinnitus began back when I was in treatment for uterine cancer at the end of 2011 or beginning of 2012.

I did not have the benefit of a huge medical team as I went through treatment. I did not have medical insurance and relied on the county’s medical services. I remain so very grateful for the county’s care that I will state up front that tinnitus has seemed a small matter by comparison with cancer.

No one has ever explained to me what causes my tinnitus or how I might treat it. Ever since the enactment of what people call Obamacare, I have had insurance I pay for without receipt of subsidies. I pay for a gold plan because I know how expensive life-saving care is. But I seldom have used my bought-and-paid-for insurance because, after I pay the high premiums and the deductibles and co-pays, medical care remains very expensive. I have had a more expensive safety net, not an affordable source of ongoing healthcare.

So I have worked on acquiring my substitute for qualified healthcare. I read online sites and try to reason my way through conflicting, incomplete, sometimes advertiser-generated, and often anecdotal information. It has suggested that chemotherapy may have damaged the hairs in my ears that assist with hearing. That damage may have caused or contributed to causing my tinnitus. Do not take my word for it. It is a theory.

I take a Biotin supplement that includes Silica and Collagen. I know. Some will say supplements are unnecessary if your diet is nutritionally adequate. Overweight people often have nutritional excesses. There is no way to judge the purity and efficacy of supplements across the marketplace. What I know is that the hair on my head, my eyebrows, my eyelashes, even the unwelcome hairs on my chin, are all thriving. Just this week someone who has not seen me in years was asking what was with the hair. It is brown, shows very little silver for one who is 58, is thicker than ever, and it is wavy. Once again, I am relying on “sign reasoning” instead of double blind tests conducted by scientists.

Still my ears ring. Sometimes it is a din. Sometimes it is a buzz. I never work or relax in a silent place. Because the “sound” is distracting, I often play a radio, turn on the TV, or run a fan to mask it in part. Nevertheless, it is never absent.

A couple of weeks ago my mom and I traveled east by car from Chicago to visit family. We picked a day in which each of the states through which we passed experienced rain. I’m not talking about wet road conditions. I was thinking Ghostbusters (1984) rain. From its script:

Dr. Peter Venkman: Human sacrifice, dogs and cats living together… mass hysteria!

For most of the four to five hours it took to cross Ohio we had trouble seeing the taillights of the cars and trucks ahead of us. It goes without saying that there was road work. The big rigs traveling on the other side of the road were in what turned into a channel formed by cement walls on either side. The water collected. As they drove past our car they sent up waves of water that slapped the windshield. Mom and I flinched each time that happened.

Road conditions improved in Pennsylvania, but the weather did not. I kept going. We did not stop for lunch because neither one of us could handle the mad dash from the car to the service stop buildings.

I turned on the car’s radio from time to time, but we never did find a station with weather reports. I would let the radio roam through the few available stations and then shut the radio off. My mom was silent except for the occasional breath caught in fear and released with a sigh when the rain eased a bit in its ferocity or a truck moved a safe distance or the windshield wipers cleared our view for a moment. I was very conscious of my tinnitus during that long drive.

While we pressed on through Pennsylvania, I located a station that was broadcasting the daily rosary. Sponsored by the Knights of Columbus Bellevue Council #1400, someone led us through a rosary addressing the Sorrowful Mysteries. I left it on and we prayed along with the priest and the others present at the recording of the event.

Shortly after the rosary ended I shut the radio off. The rain slowed down. And the tinnitus stopped.

I started to cry because it was so quiet. I cannot explain how peaceful it felt to have the noise stop. I seldom complain about it. It’s not cancer, is it? I have handled many more scary situations. It is not painful. It is not employment discrimination. It is not isolating. It is part of the soundtrack of a busy life. There are a million other things that occupy my mind on most days. I cope with it. It bothers me most at the end of the day. I lie in bed and try to clear my mind. That is when it seems most loud. Sometimes I turn on a “sound machine” that plays crashing waves or a babbling brook or rain. But that is not silence. Most nights I turn on a fan and an air cleaner. But that is not silence.

I say my prayers of gratefulness for family and friends, health and hope, talents and opportunities. I fall asleep focusing on what I have and not what I need. I am blessed, not burdened in my earthly life. I still have the little scraps of paper on which I listed my blessings and my angels on October 6, 2011, when I could not sleep on the night before my hysterectomy. I know what they say.

I pray for the people I know and some I don’t. I pray every night for the souls of the departed. I spend a lot of nights focused on the special intentions of my mom, sister, brother, and their families. I pray for friends and students who face challenges, whether large or small. I pray every night for Mike Terrill and his family and so many other brave and kind people I have met here on WordPress during my cancer treatment and recovery. Somehow those prayers make my mind quiet even if I can still hear that ringing in my ears. But let’s be honest about my prayers–I’ve been doing most of the talking.

That’s why the trip through Pennsylvania was different. This was silence. I kept wiping my eyes because it was so wonder-full.

I did some more reading online and found some reports of tinnitus reduced or abated following fast descents. Maybe the mountainous roads of Pennsylvania helped. But, in the same way I put stock in my supplements, I am putting some stock in the possibility that prayer has found for me another way to silence the din.

The tinnitus has come back. In the week after it stopped, it faded in and out. It did not stop completely during the trip home, even though we passed through Pennsylvania’s mountains on a cloudy and dry day. It continues without change today.

My mom gave me a rosary recently. This past week the old friend who commented on my changed hairdo gave me a rosary she bought for me long ago in Medjugorje, the site of many unconfirmed miracles.

I pray, but I am not one who often says the rosary. I think that might be changing.

I am sending a check today to the Knights of Columbus of Bellevue, Pa. so that they can continue broadcasting the daily rosary. And, Lord, I am listening. Whether or not prayer will stop tinnitus, I cannot say. I can still hear the tinnitus, but I think I can hear something that will help me cope with it now, too. Lord, I think I can hear You now.

Th Th That’s All Folks !!

I know. I have been silent for some time now and not because I am sick. I have had personal reasons for my silence. I apologize if you have felt hurt by my silence. However, I have continued to follow Mike’s and Anna’s blogs and want you to know how sad I am that Mike’s health has taken this turn. He is my friend now, despite the fact that we have never met. And I am grieving deeply even while I celebrate all he has done with his life. Thanks for lending your prayers or respect or support to Mike and his family as they continue to handle this tough situation with transparency, unflinching honesty, and hope that others may benefit.

Bad Taste in My Mouth

Thanks to free-graphics.com

Thanks to free-graphics.com

The saga of my termination by DePaul College of Law for having uterine cancer is about to come to an anticipated and unwelcome resolution. I spoke today with a representative of the EEOC who informed me that he is recommending that the EEOC close its file on my case and issue what is called a right to sue letter. I will have 90 days to hire an attorney to litigate the matter at my expense.

My summary of the report is necessarily brief because of the blog format, and that I must wait to receive the right to sue letter to see the actual conclusions before I may request a copy of the file under the Freedom of Information Act to learn more. This is my understanding of the EEOC investigation’s conclusions at this time:

1. My termination was not a violation of the Americans with Disabilities Act. According to current thinking, it was reasonable for the law school to terminate me after a positive test for cancer on Tuesday and before my Friday surgery because the university had a reasonable need to make sure I only missed one Friday class and I could not assure them sufficiently that I would in fact return Monday before my Friday surgery took place. I could ask to be accommodated for missing one Friday class, but apparently not for the weekend to see if I was able to return the following Friday.

It apparently does not matter that I was able to work the following week and every week thereafter. What matters is that no one could know before my surgery what would happen after it.

I guess the moral of the story with cancer is not to tell if you become sick. Had I given no information that my condition was cancer then the university would not have been so alarmed as to terminate me for having cancer.

Let’s recall what the person who terminated me put in writing:

Dear Cheryl: I was so alarmed to hear from Martha that you had to have surgery last week, but so pleased to hear from her that you are already on the road to convalescence! Please take care of yourself and don’t overdo it in an effort to achieve normalcy too quickly. You have been through a lot—both physically and emotionally—and you can’t expect to bounce back with no set-backs.
I understand that you are eager to return to your class this semester, and I know that your students would be delighted to finish out the semester with you; many of them have expressed concern about your health and enthusiastic appreciation for your instruction. I need to let you know, though, that after fully consulting with the Dean of Faculty, I felt compelled to make the decision to reassign your students to other LARC III sections. I sincerely hope that you recover from the surgery immediately, but it has been my experience that people in this situation always have slower come-backs than they anticipate. I had no way to hedge against the risk that you might return to teaching this week and then right away, or a few weeks later, find yourself simply unable to continue. My first responsibility is to the students’ learning and the smooth functioning of the LARC department, so I made the decision that increases the chances of maximizing both. I am sorry if my decision disappoints you, and I hope that you are able to understand the situation from my perspective.
We have every hope and expectation that you will be fully healed and able to teach in the Spring semester, and we will welcome you back in January with pleasure. If we can do anything for you in between now and then, please let me or Martha know. You have my every wish for your quick return to health and the fullness of life.

That letter doesn’t say I was terminated on the day of my surgery because I might not be able to work the next week. It says people with cancer always suffer setbacks and I might return and later prove unable to continue. If you cannot expect a law school to say what it means, then when should words put in writing matter, if ever?

2. Failure to pay the remainder of my contract for November to December 2011 until the following August in 2012 was just a “glitch.” The dean of the law school promised to pay me the remainder of my contract and then paid one last check and stopped. I was not paid until all my contracts for the academic year were completed, I determined the shortfall, and figured out which part of the university failed to pay me. But this was just a “glitch.”

And the reason it was a glitch and not intentional is that the university made a glitch in my favor in fall 2012 when it notified me that it would not offer me the class I taught every year for seven years but would pay me to teach a different class for the same money that semester.

In spring of 2013 it cut the pay for that replacement class in half. It now claims that the letter that offered me higher pay for fall 2012 was a glitch in my favor and the letter that cut the pay in half again for spring of 2013 was part of a preexisting plan.

If that does not make sense to you, then we are in agreement. The explanation does not rule out intention to punish me for making a complaint to the EEOC. I made more money before I had cancer than I made after the university received formal notice of my complaint to the EEOC.

The EEOC may take the position that the two “glitches” cancel out an argument of intent to deprive me of pay in 2011. I guess the lesson here is to not employ self-help. Had I not asked for payment before filing a complaint with the EEOC, not told the university I was filing, and waited to see if the fall 2012 glitch in my favor actually occurred, then it might not have occurred and it would have been difficult to show any glitches occurred. I would then–possibly–be able to show intent to deprive me of pay.

The fact that I was uninsured and needed my income to pay medical bills and that the delay from November 2011 to August 2012 caused me financial hardship is irrelevant. Money paid eight to nine months after it was due was paid soon enough to rule out discrimination.

The fact that I was declared unreliable and deprived of the opportunity to work is of minor significance to anyone but me. It appears that people paid to stay home miss nothing because the opportunity to work is not itself a right. Have you ever worked really hard for less money than you deserved to be paid and been proud of your work? Well, then you may understand why being deprived of my work when I was dealing with a cancer was painful to me, whether or not I was eventually paid to stay away.

3. No retaliatory intent or actions. The university revealed to the EEOC a preexisting plan (not shared with me even as of this date) to cut adjuncts to one course per calendar or academic year–which ostensibly explains why I was cut down to one class per semester after my diagnosis. I am not convinced this was the preexisting plan, but will have to see the file to learn more.

Additionally, while some witnesses overheard and reported statements that may have indicated some negative feelings toward me by the supervisor who terminated me and disparagement of my reputation to others at the university, that was “he said/she said” testimony and not sufficient for the EEOC to pursue further.

I wait now for the official letter to confirm my understanding of the findings. And I have a bad taste in my mouth. Sometimes what people do to you after you are diagnosed with cancer feels hard to bear, too.

But all of us who have faced such a diagnosis learn we are stronger than we thought. Cancer has tested me in many ways and I wake up every day since my diagnosis dealing with things that I never imagined would happen. Disappointment in the behavior of some people and institutions that surround me sometimes seems to go with the territory.

What will see me through this situation is the strength drawn from the other people and institutions that are there to lend an ear, a shoulder, a hand or a smile during the dark, dark days that have followed my cancer diagnosis. I appreciate everyone who has kept my faith in the goodness of people alive during the last two years. Thanks to you, I will never be down or out.

Humbling Experiences

Another Waiting Room

Another Waiting Room

My relationship with my gynecological P.A. is a work in progress. She very much wanted me to see a general practitioner in a clinic setting. So she put me into some waiting list for an appointment at a clinic in Logan Circle. The first time I came up for an appointment the notice came about a day before the appointment. I was unable to make it because I had to work. When I was last at the hospital to see my oncologist the resident checked and informed me I was scheduled for today. So I had a month’s notice.

I will confess that I was reluctant to go. I’m feeling pressure from the P.A. to take blood pressure medicine. My blood pressure has gone up and down. It was at its highest within minutes of learning I had cancer. I shed no tears–not even one for several months–but the stress was affecting my blood pressure for a couple of days. Within three days my blood pressure was back to normal and stayed that way until sometime in the last year. Back in about February it was 180/96. That was the day I had my second post-hysterectomy internal exam. I was over-the-top nervous about the exam. About a week before that appointment it was only 161/111. In May I started getting a swollen ankle and leg and felt the blood pressure climb. My oncologist doubled the dose of the water pill I take. That seems to help the edema and the blood pressure. I have my own cuff at home and take it periodically and my blood pressure was back in the 140/86 range. In August, my blood pressure was 151/92. Dr. H felt it was not a problem, particularly because I have lost weight since February and continue to do so. I am resolved not to start another drug unless I first research it. Once you start some of these drugs it is hard to get off of them and they all seem to cause more side-effects. I am tired of dealing with side-effects!

The other reason I was not keen to go is the hernia. Dr. H wants it fixed. I really cannot contemplate checking into the hospital for surgery after my December 2011 admission to hell there. I am well aware of the risks of exposure to infection in hospitals, and that place did not maintain cleanliness. I thought I might die in that place. I’m not going back there as an inpatient until it is the last option on the table.

October 1 is when the health insurance exchanges open in the U.S. I have not even been able to get a quote for health insurance since my diagnosis with cancer. This will be a new opportunity for me to obtain health insurance on my own. I have no idea what I can afford, but I pray I can afford some new options.

I went for the clinic appointment despite my misgivings. I arrived early. It took forever to find street parking. I entered and went through the same type of processing as at the hospital. Get up. Answer questions. Be seated. Get up. Answer questions. Be seated. It is like the childhood game Simon Says.

I brought work. Lots of work. And I waited. At one point my vitals were taken. My weight was down. The clinic is part of the same county hospital system as my hospital, but the nurse had to ask me about my allergies to medicines because my records were not available or she did not access them. It was so disappointing to know that once I saw a doctor we would need to go through so much medical history.

My blood pressure was 190/110! I had been waiting for some time amidst other patients. I have to admit it was uncomfortable. Small children crying. Wendy Williams (big news today–absolutely nothing), Bethenny Frankel (big news today–some people have friends who make them fat by cooking for them), Fox News (big news today–Sen. Ted Cruz read a Dr. Seuss bedtime story in his 21+ hour diatribe against the Affordable Care Act), and some other talk show that drove me up the wall as angry people yelled at each other.

All voices today at the clinic were heavily accented. I did not recognize my own name when it was called, and I speak some Spanish. My ex-husband could speak Spanish. I’ve heard my name spoken with that accent. At one point, I heard my name and got up and went over to the reception area only to find no one looking for me. All three receptionists were taking on phones. So I said to myself, “Now I’m hearing voices.”

As soon as I sat down, the receptionist called me again. She said, “Sorry, I forgot I called you.” I was not the only person having trouble focusing.

I should be used to this. But I am no longer sick. Just pained after surgery, chemotherapy, and radiation.

The nurse asked if I felt okay, and I did. No headache. No stress other than the situation. I had plenty of work to do, deadlines approaching, and twenty things I’d rather be doing. Even unpacking sounded great.

Two hours after my scheduled appointment I was out of work to do. I was sitting next to a man with a bad cold in the waiting room. I was tired. I was unbelievably sad that there were so many people for whom this was the best option for care. I told the receptionist I needed to leave. I had work to do.

The receptionist called a nurse who put me in a room. Then I heard my future doctor (Dr. S) ask someone to prep the woman in the next room for a procedure, and he went in there. I waited another fifteen minutes before I left without seeing the doctor. It did not matter if he would be free in five more minutes or in fifty. I was as twitchy as I ever get and needed to get out of there.

This is nothing new. This is medicine for people without health insurance. I think by now I should be philosophical and copacetic. But I am tired and stressed and I wonder how anyone with a job ever gets medical help in the system. From the time I left home in the morning until I got out of the clinic I had spent more than four hours without meeting the doctor, and I fell behind in my work.

I am grateful to have this as an option, but I am praying that the Affordable Care Act means I can afford insurance and schedule an appointment instead of being ordered to appear on a day when I need to be at work. I am praying that one day soon I will be able to speak to a doctor about my concerns for more than five minutes.

I have felt bad all afternoon for leaving, but I am now one-half day behind in my work and have non-negotiable deadlines to meet on Friday. This semester I have 25% more students in one class and am paid 40% less than I would have been if law schools could help their graduates find jobs in the current job market or if full-time pay was a little lower than it now is.

At the rate I’m going, tomorrow for me will be like a blister on the back of your heel when you’re wearing new shoes and it is still morning.

Some days I have to remind myself that I am just underpaid and not down and out. I may be feeling humbled by my circumstances, but I still have my sense of humor. That’s the real reason why I’m Not Down or Out.

What breast cancer awareness should mean:

October is the month when society focuses the public’s attention on the cause of breast cancer research. I’m going to use the next month to share postings by some of the courageous people I have met online who are responding to diagnoses of breast cancer.

I used to accept the PINK breast cancer culture: pink ribbons on yogurt containers and everything else. If you read the breast cancer blogs as I now do, you get an education on how deceptive some of the breast cancer charities and activities can be. The pink ribbons on products may have nothing to do with charitable activity. Moreover, some advertisers put pink ribbons on products that offend breast cancer patients. For example, naked starlets with pink bows endorse the cause when they really advertise their own careers. Last year someone had bare-breasted women jump out of planes and called it a breast cancer fundraiser. Outrageous! Breast cancer is not something you can wrap with a pink ribbon. Moreover, the word these days is that we’re curing cancer. No. We are disfiguring people to remove precancerous conditions that might never become cancer and calling people cured. We’re encouraging women who have no signs of cancer to undergo mastectomies and calling that prevention. Thirty percent of people who do have breast cancer will not be cured. They will develop cancer that spreads and compromises the length and quality of their remaining lifetimes. We spend very little of the enormous amount raised by breast cancer charities on those with metastatic cancer. Yet 30% of those with breast cancer will have metastasis.

Read more about this in this posting. Give generously to the cause of finding effective treatment and cures of cancer, but give wisely. Allocate your efforts to charities that have their priorities on what matters, not on what is pink. Try http://www.METAvivor.org/Donate.html. Save lives through research that focuses on the lives of people with metastasized breast cancer!

Dglassme's Blog

  • Be aware it is a horrific disease that has taken many lives
  • We need to find a CURE, about 30% of people diagnosed with breast cancer at ANY stage will develop distal metastasiswhich is NOT curable todayCure 30
  • This high percent creates a frenzy of lifetime emotions for ALL who have been diagnosed, what if it comes back? For about 1 in 3 it will
  • Cancer is a huge money maker so key players may be in no hurry to see it go away
  • We need to be vigilant that large fund raiser aren’t being misappropriated
  • We have to move past “I bought this cool pinK thing so I’m aware” – aware of what? That breast cancer exist?
  • It is a demoralizing disease that devastates all parties involved — patient, family, friends, doctors, etc.
  • Cancer is an overwhelming whirlwind of information for all involved, most have no idea where to…

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The Anniversary

My two-year uterine cancer anniversary is 21 days away, so Mike’s 5-year anniversary after being diagnosed with brain cancer sounds like cause for major celebration. My eyes are wet with unshed tears at the thought of all he’s been through just since I found his blog. I am very mindful of al the cancer statistics that apply to me, especially those relating to secondary cancers and returns of cancer. When I think about it I imagine that I–the person who has never had the slightest interest in sports–has been handed the ball in the last 60 seconds of a hometown football game. I’m at the 56 yard line (because I’m 56) and I need to run or we’ll lose everything we worked on all “season.” The pressure on you when the clock is running down has to be incredible. When I imagine this I get tired. So I go online and read the blogs of the men and women who are my heroes. The survivors who know better than I do how tough it is to run down the field and the clock making memories. And then I pass the ball to this guy–Mike–and he just keeps carrying the team. Stand up and cheer with me. Yeah, Mike! Yeah, Mike! Okay, now I’m crying. Sorry for the typos–my eyes were filled with unshed tears!

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