Not Down Or Out

It could be worse. I might not be laughing.

Category: Cancer and Treatment

What’s Eating You?

Have you noticed how many stories there are in the news about people suffering from or dying from a flesh-eating infection? https://www.cbsnews.com/news/flesh-eating-bacteria-florida-womans-death-gulf-vaction-necrotizing-fasciitis-shines-light-on-rare-infection/.  Some of the news stories published in the last month have included speculation that we may see more cases as a result of climate change.  https://www.businessinsider.com/flesh-eating-bacteria-spreading-due-to-warmer-oceans-2019-6. The theory is that many are experiencing infection when they suffer a scratch or cut and are shortly thereafter using a pool, hot tub, or, even more commonly, a body of water like a lake or the ocean. In some cases, the news stories identify the form of infection suffered as Vibrio vulnificus. That infection is associated with warm, salty or brackish water. The infection enters the body through a cut or when one eats raw shellfish.

So far, the evidence of an increasing number of cases seems anecdotal. Take for example, this statement in an article by Business Insider:

“In 2017, we saw three cases of severe skin infections, which raised some flags,” Dr. Katherine Doktor, an infectious disease specialist at Cooper University Hospital who co-wrote the report, told Business Insider. “In 2018, we saw two more. These five cases are significant because in the eight years prior to 2017, we only saw one case of Vibrio vulnificus at our institution.”

https://www.businessinsider.com/flesh-eating-bacteria-spreading-due-to-warmer-oceans-2019-6.

When I experienced a flesh-eating infection in 2017 it had nothing to do with water or shellfish. My infectious disease doctor said that most of us have staph, strep, Klebsiella, Clostridium, or, more rarely,  E. Coli on our bodies at some time.  https://jcm.asm.org/content/50/12/4008; https://www.livescience.com/63203-flesh-eating-bacteria-cut.html; https://www.healthlinkbc.ca/healthlinkbc-files/flesh-eating-disease. If these infectious bacteria find an open cut or wound, even a small one, the average individual’s resistance will fight off the infection. But, whether it is the vibrio or another infection that finds an entry, if the individual’s resistance is lowered by some weakening of the immune system, then the infection can take off. At the time, I was unaware that I had become diabetic. I was several years past treatment for endometrial cancer and the point at which infection began was in an area that had been treated with radiation. My doctor said either of those conditions might have made me more vulnerable. Kidney or liver disease, alcoholism, HIV, and, in some cases, chicken pox, can weaken immunity. https://www.cdc.gov/groupastrep/diseases-public/necrotizing-fasciitis.html; https://labtestsonline.org/news/flesh-eating-bacterial-infections-are-rare-can-be-life-threatening. Some sources provide even more extensive lists of vulnerabilities. https://rarediseases.org/rare-diseases/necrotizing-fasciitis/.

The important takeaway from recent cases is  the need for swift action. In my case, I had a tiny red dot on my abdomen that hurt disproportionately to its appearance. I developed a fever. I made an appointment to see a doctor and waited several critical days for that appointment before the pain was so severe I went to the emergency room. The intern who first examined me was not thinking of a flesh-eating infection. While she continued her work-up, she speculated that, due to the lack of readily apparent cause for my pain I might be sent home with an antibiotic to “let things fester.” Had that been her final decision, I would most certainly have died. My infectious disease doctor said that I was within an hour of the point of no return when I showed up at the hospital.

The attending physician came in to examine me and started me on a course of intravenous antibiotics. By the time I left the hospital two weeks later, I had been given a large number of different antibiotics. I had flesh surgically removed all across the abdomen. I was lucky. Some sources say 600-1200 people will get such an infection each year. One in three or four who get such an infection die. https://www.webmd.com/skin-problems-and-treatments/necrotizing-fasciitis-flesh-eating-bacteria#1; https://labtestsonline.org/news/flesh-eating-bacterial-infections-are-rare-can-be-life-threatening. Many will lose a limb or a body organ before treatment concludes.https://www.livescience.com/63203-flesh-eating-bacteria-cut.html .

I had several surgeries to remove the infected flesh. The infection can consume skin, muscle, nerves, blood vessels, and fat. My doctor found my infection had multiple bacterial causes. Some doctors speculate group A strep is most commonly the instigator. https://www.cdc.gov/groupastrep/diseases-public/necrotizing-fasciitis.html.

If you are in a vulnerable category, then take care to wash and disinfect any wounds or punctures. Keep wounds clean and bandaged. Avoid exposure to ocean, lake or other waters while you have an open wound, use hand sanitizers, and see a doctor immediately if pain or redness or flu-like symptoms occur.

 

Counting to Seven

Today it is the seventh anniversary of my cancer surgery. I am grateful beyond words for the seven years of life I have enjoyed since that fateful day. I have not forgotten that my surgeon first told me I was a stage three case. My prospects were a 45% chance I would be alive in five years. There has been no sign of cancer since January 2012.
Thank you family and friends for supporting my spirits, taking me to treatments, and for your prayers for me.
Thank you, Cook County Stroger Hospital And Adventist Hospital for providing me with care when I was without health insurance.
Thank you students at DePaul University and Roosevelt University for your patience with me as I underwent treatment.
Thank you authors and readers of my and so many WordPress blogs for your encouragement and advice. Some of you are gone from WordPress, some from this earthly plane, but you are not forgotten–especially Laura Lynn, Lori, and Micheal.
Thank You, Lord, for the gift of more life. I know I have not deserved it. Better people than I have perished from this horrible disease. I will continue trying to do what I can to help others in their hour of need.

Happy Anniversaries

This Saturday will be the one year anniversary of my discharge from the hospital after Holy Cross Germantown Hospital saved my life. I had a flesh-eating infection that one doctor said had me 45 minutes from death when I showed up at the emergency room complaining of an extremely painful red dot on my abdomen.

I have seen several stories about cases of flesh-eating infections that did not end as well as mine did. Amputations, dialysis, heart conditions, and death have stolen so much from the few people whose cases were reported in newspapers.

Some went swimming in an untreated or improperly treated body of water, including a pool. A couple slogged through flood waters to save their own lives or others’. I saw one story about the hazards of eating uncooked shellfish.

I didn’t have those sorts of exposures prior to my diagnosis. But I was about seven years from radiation therapy following a hysterectomy to remove uterine cancer. The hypothesis offered to me is that the radiation somehow made my flesh permeable and allowed the swift spread of infection across my abdomen.

I recently read an analysis of a case of infection somewhat similar to mine that speculated that carrying extra weight might improve the prospects for recovery because fat could give the infection something to consume in place of vital organs or limbs. If that is the case, then I have a new appreciation for fat. I once heard a comedian say that the best reason for being overweight was that overweight people are harder to kidnap. There might be something to that. Now there are two advantages to weigh.

I used the last year to make some improvements in my health. I am still seeing a chiropractor who helped me reverse the lack of alignment in my neck after two weeks of lying on my back in the intensive care unit. When I started seeing that chiropractor I was in constant pain and could barely move my right thumb and first finger. Now the pain and the numbness are gone. There is a little stiffness in the first finger, but the damage that was done to my nerves in my neck has been reversed.

I dropped my A1C from 7.5 to 5.7 per my last blood test. I am still taking meds for Type 2 diabetes but hope that may one day stop.

I lost weight–lots of weight. I feel pretty good most of the time. Of course, I am getting older. There are days when I grouse about the accumulated aches and pains, the sense that I am lopsided because the surgeon removed more of me from the left side than from the right and flesh doesn’t rearrange itself to even things out no matter how much I wish it would. There are days it hurts to climb steps or descend them. There are days it hurts to lift or carry. But I am alive. And the cancer that felled me in 2011 is still absent from my daily life.

I do not begrudge anyone their right to express suffering. Sometimes talking about it is the only thing that seems to lift it off of one’s back for a moment. But I am so filled with gratefulness for the work others did to save my life. I went by the hospital a couple of weeks ago to leave thank-you notes at the ER, ICU, and surgical unit. I dropped off treats as well. I wrote to the doctors whose talent and persistence helped me to recover. If you are lucky enough to have a condition that medicine can address and doctors skilled enough to diagnose and treat you, then anything is possible.

Which is why we need to look out for those whose luck is less. We need to fight for every American to have access to quality medical care. And we need to resist the arguments that it will be too expensive or that people bring their own woes upon themselves. I have survived cancer with the help of programs for uninsured individuals. I worked throughout that process in jobs that are permitted to avoid insuring adjunct professors. i survived a flesh-eating infection thanks to the insurance my improved employment situation afforded me. I am not a better person for having a job that recognizes the value of my services.

The value society derives from a healthy populace is not measured in the cost of the healthcare services but in the potential realized when people are able to attend to their health. Thank you to those who made my longer life possible. Let us offer such care to others who need it. Let us save more lives. Let’s start by ensuring the continuation of the Children’s Health Insurance Program (CHIP). Let’s stave off efforts to cut Medicaid and Medicare. Let’s stop calling programs like Medicare “entitlements” as if the word described something a lazy person claims without cause. It in particular is paid for by workers so that it will be there when they need it. And they pay whether they will live long enough to reap its benefits or not. So it is earned. Let’s make more happy anniversaries for more people.

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!

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.

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!

%d bloggers like this: