A War Story
The room was already darkened in the hurried anticipation of the staff to get home to their loved ones. I was alone, except for a sole technician who busied herself in the next room with the sort of impatient sounds that said she, too, had other places she wished to be.
Only minutes earlier a host of doctors and technicians had been scurrying about the room, sinking long needles into various places in my back, and passing my body in and out of a cat-scan machine. "Does that hurt, does that hurt?", they kept asking as they probed for whatever it was they were looking for along my spine. Finally, having located their target, a large syringe was employed, and a small amount of fluid was withdrawn.
As I lay there on the gurney waiting for the belated volunteer to return and wheel me ever so carefully back to my hospital room, two competing emotions washed back and forth across my mind. First a sense of relief.
Finally, after so many months of agony and frustration, we would have some real answers to the incredible pain that I was experiencing in my back. At last we would know for sure what it was that we were dealing with. But then, what was it we were dealing with? The sense of fear was inescapable! Why had I not been getting better, but worse?
For most of the previous 7 months, pain had been woven into the fabric of my daily existence. Shortly after Thanksgiving, I'd begun to notice the mysterious presence of a steady pain between my shoulder blades. A little "fender bender" in which I was rear-ended just a few days earlier was the only remotely possible cause I could point to.
In January my husband and I decided to redecorate our kitchen. The night we completed the project, my left shoulder began to throb with excruciating pain. It felt as if I was being repeatedly stabbed with a large butcher knife.
Subsequent weeks of January and February found me wearing a path in and out of our family doctor's office with complaint of increasing pain. My back hurt, my shoulder was killing me, and it was becoming increasingly difficult to walk. His diagnosis? Bursitis of the shoulder, complicated by a kidney infection that was keeping fluid from properly draining from the muscles in my body.
Inactivity was ordered, along with heavy doses of antibiotics. But as the weeks came and went, the suffering intensified. The pain killers I was forced to use for sleep were making minced meat of my intestines. The number of sleepless nights mounted.
By mid-February, hospitalization was what the doctor ordered. X-rays showed "hot spots" on the bones of my shoulder which were interpreted as the bursitis. Daily ice packs were given along with massive doses of IV introduced antibiotics for the supposed ongoing kidney infection. After leaving the hospital, I kept my left arm in a sling for the entire month of March.
Twice a week, for a month, I spent an hour back at the hospital in the physical therapy unit getting cortizone treatments on my shoulder. But by April the pain was still increasing, dramatically!
What was happening to me? Why was I not getting better? Why wasn't this kidney infection clearing up? Here I was, only 35 years old and in otherwise good shape, yet crippled with debilitating pain. How long was I going to have to endure this torment before my body would do a turn around? Our family doctor continued to believe that as soon as the kidney infection was gone, the muscles in my back would return to normal function. In the meantime, rest and wait.
April and May were hellish months! Sometimes the pain in my back was so fierce that it was sheer agony to do the simplest thing like turn over in bed--so I didn't. I began to spend most of my days and nights flat on my back in bed, just waiting for things to get better. Sleep was nearly impossible.
My husband was forced to make his bed on the floor of our bedroom, for even his slightest movements beside me in bed would trigger the muscles in my back, causing me to erupt in screams of agony. Just hearing our 2 children walk by outside our bedroom door was enough to tighten my muscles into gripping spasms that made even breathing difficult.
It was a hard time for my kids. They were not only worried about me, but angry that I demanded so much attention and could not fulfill my motherly duties toward them. Both were in grade school and needed their mom to fill their emotional tanks with hugs and kisses. Instead they got daily doses of "Don't get too close!" "Don't touch the bed!" "Be careful in here, please!"
Fortunately, my husband's work was such that he could do it at home. He became both mother and father to our kids, and for me, full time nurse. He cooked our meals, washed our clothes, kept our house--and when I felt the call of nature, assisted me to the bathroom. It usually took me about 15 minutes, with a lot of his help, to get from my bed the the bathroom door across the hall. The relief in my bladder was often overshadowed by the humiliation of needing Dave to help me lower my body onto the stool, then assist me to stand up when I was finished. As the days trudged by, even that became impossible.
Finally one morning in late May, we'd had enough of this waiting around. We wanted to believe what our doctor was telling us, but things just weren't getting better. We didn't want him to think that we'd lost confidence in him, but we needed some answers. That day we managed to get my tortured body out into the car and over to the emergency room of the local hospital. Here, we thought, we'd be able to get another doctor's opinion on what was going on, perhaps even be admitted to the hospital for tests. Unfortunately, the only reward we received for our efforts was more frustration. After conferring with our family doctor over the phone about whether or not all this pain wasn't really just in my head, the attending physician administered a shot of muscle relaxant, sending us back home with a prescription for valium and advice that I do some slow walking to begin to bring my muscles back to work again.
Thanks for nothing! We left there frustrated, knowing that we had not been helped. Next day we managed one last trip to our family doctor. This time we wanted new answers!
And the answer is...
The quietness that now enveloped me as I lay on the gurney in the Cat-scan room reviewing all that had led up to this moment, was suddenly broken as a young doctor thrust open the door and entered. He stood in the light that followed him from the hall, looking around in the semi-darkness until he spotted me.
Hurrying to my side, he said, "Hello, Mrs. Frahm? My name is Dr. S.... I'm a surgeon. In fact," now glancing at his watch, "I'm late for surgery. Mrs. Frahm, I hate to tell you this, but you have advanced breast cancer. You need a mastectomy, and I can fit you in at 5:30 pm tomorrow, OK?"
Upstairs in my hospital room, my husband was receiving the same news from a newly appointed oncologist. Stunned and emotionally overwhelmed, he managed to ask only one question--"How long does she have?"
"I'm not going to pull any punches. You need to know the truth," answered the oncologist. "Most people who have cancer as advanced as hers die within 2 years." (Only later did we learn from him that even this was highly optimistic.)
Finally, I was wheeled back to my room and placed back in my bed. With frightened eyes brimming with tears, and hearts ready to explode, we clung to each other and wept. Can it be true? Is all of this really happening to us? Is my lifelong nightmare coming true?
We mourned my death.
A "False Negative"
That's the term used in the field of mammography when the results of a woman's mammogram show that the lump in her breast is not cancerous, when in reality it is. Statistics show that 10 to 30 out of every 100 women who have mammograms receive false negatives. These unfortunate women return to their homes relieved with the news that they have nothing to worry about. Only later, as the cancer has had chance to grow, does it become apparent just how big their worries should've been.
Five months before the pain began to become noticeable in my back, I'd discovered, during a time of self-examination, a small lump in my left breast. My family history of breast cancer told me that these were not to be ignored. My grandmother had died of breast cancer. My mom, although never developing cancer, had experienced multiple recurrences of cysts in her breasts. Fearing the fate that had overtaken her mother, she'd undergone a double mastectomy when she was in her 30's.
Needless to say, I called our family doctor immediately!
The mammogram I'd gotten at the local clinic spotted what was actually 2 tiny lumps and labeled them non-cancerous, benign. The additional test they ran, an ultrasound, also said they were negative.
"Nope, no cancer here," was the doctor's reply to the ultrasound test.
"How can you be sure?" I insisted.
"If a lump is cancerous, it shows up on the screen as a solid mass. These lumps--they're full of fluid. These are just cysts that you have nothing to worry about."
But only five months later aggessive breast cancer had begun to make itself known as the growing pain in my back. By the time I'd finally been admitted to the hospital for tests, the cancer which had begun as two little lumps in my left breast had spread throughout my body. Tumors were found covering my skull, my shoulder, my ribs, my pelvic bone, and up and down my spine--besides the huge tumor that had developed from those two little so called "non-cancerous" lumps in my breast. So aggressively had this cancer attacked my body, that it had eaten a stress fracture right into my backbone. My back was actually broken!
The next day after Dr. S..... had made his dramatic entrance into my life with his crushing news of breast cancer and my need for surgery, Dave and I insisted that we have time to talk with him before making this decision. He apologized for having been so abrupt, assuring us that he was only interested in what was best for me. In his mind I needed surgery, soon! His schedule was filling up fast. He just didn't want to waste precious time with niceties.
As we interacted with him concerning my options, he said something that every woman needs to know. Something that I wished somebody had told me nearly a year earlier when I'd discovered the lumps for the first time.
"Don't trust the results of a mammogram or ultrasound" he said. "If you have a lump, always have it biopsied!"
Surgery, Radiation, Chemotherapy
I had the mastectomy. At precisely 5:30 that evening, my left breast was removed, along with a tumor the size of my entire breast beneath it. At the same time a hickman catheter was implanted in my chest, a 15 inch tube leading directly to my heart through which chemo-therapy treatments were to be administered.
The next day, still groggy and hurting from surgery, I was hooked up to my first of many, many bags of chemicals designed to kill the cancer cells that had taken up residence in the rest of my body.
The picture wasn't a bright one. We were not happy campers. Life had fallen down around our knees, leaving us exposed and vulnerable. We felt helpless, hopeless and hollow. Cancer had descended upon us like a fog, leaving us groping our way toward the future. What do we do now? How long do I have? How shall we tell the kids? How should we live?
When I first received the news that I had cancer, my one burning question was whether or not there were others with the disease as progressed as mine who had survived. If nobody had, I wasn't sure I even wanted to try.
On the other hand, I wasn't one to simply throw in the towel and play helpless victim. Such a thing would be contrary to my nature. I was a fighter. If there was any way for me to beat cancer, I was determined to find it.
After I was released from the hospital I went to the public library and immersed myself in books about cancer. Since there were 497 entries, I narrowed my research to my own disease--breast cancer. Many of the books were lofty commentaries filled with statistics that only a doctor could, or would want to understand--books that coldly sang my funeral derge. Back to the shelves they went, to gather more dust. But in some of the books I found the stories of various individuals who had overcome every form of cancer there was. Some of these folks had made it back to life from their deathbed. With their encouragement and my own resolve to be an overcomer, I decided mine was going to be the "Mother of All Battles"!
For the next year and a half I aggressively subjected my body to all that the medical world had to offer in the battle against cancer. A couple of the larger tumors near my backbone were given 2 weeks of radiation. This, coupled with the chemotherapy I was on, was more than my body could handle and landed me in the hospital with severe pneumonia. By God's grace my body overcame that set-back and eventually I got back on the chemo-therapy track. Actually, I tolerated chemo amazingly well. As promised, my hair fell out. I remained shiny bald for 18 months. And the chemo made me very, very tired. But the positive effects it had against my cancer outweighed all the negatives.
For a time my cancer count went steadily downward toward remission. Things looked hopeful. I was grateful for the chemicals I was putting into my system to poison the cancer, looking upon them as a trusted friends. But about 10 months into treatment, just as our oncologist had predicted, the chemo I was on began to wane in its effectiveness. My cancer had grown resistant. A new blend of chemicals was tried. To this we added some hormonal therapy. But each time counts were taken, it was obvious that the disease was gaining ground and I was beginning to lose the battle.
"There's a last resort you may want to consider," said our oncologist. "It's a bone marrow transplant. If you wish, I'll call a couple of hospitals where they're doing them and see if you're a good candidate."
Bone Marrow Transplant
A year and a month after my original diagnosis with cancer, and after 3 frustrating postponements, I was accepted into the bone marrow transplant program of a major mid-west hospital. This was to be an "autologous" procedure. In other words, I was going to be my own donor. The treatment involved 4 steps. The first was to collect from my own blood some of its stem cells to be saved and reinjected into my body at a later point. Step two was to put me in an isolation room and bombard my cancer with massive doses of chemotherapy, many times stronger than my body could safely tolerate under other circumstances. The goal was to kill all the cancer in one powerful swoop. Step 3 was to reinject my stem cells that had been saved in step 1, hoping that they would take root and rebuild my bone marrow that had been destroyed along with the cancer in step 2. Keeping me alive while my stem cells labored to multiply was the all important goal of step 4.
Several hours a day for 2 weeks, I was hooked up to a machine that collected stem cells from my blood. Having completed that process, I was admitted into an isolation room to begin steps 2-4. For the first 7 days my system was saturated with chemotherapy. I was literally being killed on the inside. The chemo was getting after my cancer, but it was also destroying my good blood cells and immunity system. Any sort of germ or infection that entered the room was a death threat. My husband, kids and mother had moved for the summer to the city where the hospital was located and were allowed to visit in the room, but had to wear shoe coverings, gowns, rubber gloves, and face masks. I couldn't even have fresh flowers in the room, for fear that they might carry in some sort of bacteria.
At the beginning of my second week in isolation, the collection of stem cells that had been previously gathered was reintroduced to my body. The process of waiting for them to rebuild my now destroyed bone marrow began. In all I spent 52 days in that room, much of which I don't remember. My husband has had to fill me in on nearly the entire month of July. The constant flow of drugs to help my body cope with the nauseating effects of chemo saturation and to guard it against infections left my brain numb. I don't even remember the emergency surgery mid-month when pneumonia had shut down my right lung and my kidneys had begun to fail. It simply didn't register in my head when they wheeled me toward the operating room, that I was tetering on the edge between life and death.
My husand has reviewed with me the emotions of that night. The kids needed to be told that I was in very serious condition and might die shortly. He spoke to them gently, holding their hands in his, then putting his arms around them in a huddled mass of sobs and tears. It was very difficult for them all. He called some friends back home asking them to pray. My dad was notified and began making preparations to come. Together, Dave and our kids sat with my mom in the surgical waiting room, preparing their hearts for the worst. Tears were shed, prayers offered, shoulders leaned upon. A note Dave made in his pocket diary that night read "death predictable".
Hours past as they waited to see what was to become of me that night. Finally, in the wee hours of the morning, the surgeon entered the waiting room and spoke to Dave. "The lung itself looks OK," he said. "We took a piece of it so we can see what's going on in there. Better go home and get some sleep now."
A betting man would've been wise not to put any money on my recovery. Most patients who die during this kind of a bone marrow transplant do so because of complications caused by pneumonia. It looked very much like I was about to join them. I was being watched very closely. Each morning a technician would wheel in a portable x-ray machine to take new pictures of my lungs. A 12" tube had been inserted into my chest to drain the fluid from around my lung. Between that and the fact that the surgeon had pulled apart my ribs to get a good look, it hurt to even think about moving my arm, much less lie on my side.
The biopsy revealed nothing unusual, at least as far as making changes to the drugs I was being given. It never became apparent why the mix of antibiotics I'd been on from the start of the transplant procedure hadn't protected me from developing pneumonia. There was nothing to be done but to keep pumping me full of the same stuff and hope for the best.
Truly by the grace of God I began to get better. I attribute that to the prayers of friends and family who were appealing my case before the Creator. The hosptial staff really didn't expect me to recover. I'll have more to say about the tremendous power of prayer later in this book. For now I want you to know that undergirding all that is written in these pages is a very strong conviction that God has complete authority over each of our lives.
As late July turned into early August, I began to gain back some of my strength. Things began to look hopeful. Perhaps I would survive this treatment after all. And hopefully all the cancer in me wouldn't. I hadn't eaten a thing for weeks, receiving my nourishment through an IV tube. Food was reintroduced to my daily routine. Gradually I began to be able to keep some of it down.
The coughing and vomiting which had become a major part of my hourly existence during these weeks and months had caused my eyes to go bloodshot. My left eye was so completely red that no white was visible. It was real sci-fi! It didn't hurt much, but visitors would cringe when they first saw me. I'd also developed a rash that covered me from head to toe with deep reds and brilliant purples. My skin had been burned from the inside out, turning it eventually to a leathery brown. The outside layer of my mouth and gastro-intestinal track blistered and fell off. What a sight I must've been! Tubes running in and out of my "bald headed, bloody eyed, covered with splotches, decaying body". Yuck! Besides all these outer manifestations, the massive amounts of chemotherapy administered had taken considerable tole internally. Damage was sustained to all my vital organs.
One day, the time had come to do another bone marrow biopsy, a painful procedure of inserting a long needle deep into my hip bone to withdraw bone marrow. Such a procedure had been performed on me before I'd left home for the transplant. At that time cancer cells had been found in my marrow. Checking it now would tell whether the transplant had been a success--whether going through this hell had been worth it.
The days that passed between the biopsy and getting the results back, did so slowly. Didn't the lab know how important this news was to us? Finally the word came. They had not been slow, but careful. There were some things in the biopsy that they needed to take a closer look at.
"I'm so sorry," said the doctor taking my hand, her eyes welling up in tears as she spoke. "There's still alot of cancer in your bone marrow."
A friend was later told by my doctors..."Anne Frahm? Oh yes, she's just one of those unfortunate people for whom the procedure didn't work. It was hopeless, really."
That was a hard pill to swallow! The cancer was still there. The procedure had not been as effective as was hoped. It had killed a lot of the cancer cells, but not all. What was left would be multiplying. Anymore chemotherapy was out of the question. According to the doctors, it was now only a matter of time before the cancer would finally win the war.
It was hard to stay there in that room for a couple more weeks doing nothing but waiting for my stem cells to graft in enough to raise the blood producing capacity of my bone marrow. My white blood cell count teetered between 0 and 100 for days. Normal is between 4,000 and 10,000. I needed my count to go up before they'd release me into the "real world" filled with germs that only my white cells could protect me against.
My mother heard that there was an experimental drug being tested on some of the patients in the ward that had the potential of stimulating growth of white blood cells. When I asked my doctor about it, his reply stunned me. "There is a limited amount of it available at that point for research," he said. "It's therefore being held in reserve for patients with a more favorable long term prognosis than yours. I'm sorry."
It was as if he'd already put me in a coffin and was nailing it shut! Whatever wind was still in my sails might've left me at that point had I not had a strong belief that I was in God's hands and that in any situation life presents us with, there's always hope. A favorite truth from the Bible encouraged my confidence..."Fear not, for I am with you. Be not dismayed, for I am your God. I will strengthen you, I will help you, I will uphold you with my victorious right hand." (Isaiah 41:10 NIV)
Eventually the team of doctors on the ward decided that I was to be released. No, my white blood count had not yet reached a safe level to protect me against the germs of life, but there was no telling when it would. I might languish in the hopital for weeks. Besides that, they needed the room. There was a long list of others who wanted to undergo the transplant procedure; others for whom it might be more successful. It was time for me to leave.
The morning of my emergence from the hospital room, the doctors came in and gave me a little speech. It was a blend of cautions I needed to remember in order to protect myself against germs, mixed with cheery ideas about how good it would be for me to get back home and into living my life again. Basically what they told me was to go and live life to its fullest. I knew that behind their words was the unspoken prognosis that my time was short. "Eat, drink, and be merry," they were saying, "for soon you shall die."
But as I've said, there's always hope! The doctor's were giving me up as a "gonner", but I wasn't ready to check out of life yet. I was still in this fight to the finish! It wouldn't be over until I'd met my Maker.
Turning to Nutrition
Early on in my cancer battle, I'd read about the link between cancer and diet. In fact, I'd visited a nutritionist in my home town shortly after I'd begun chemo treatments to see what she might have to offer. I warned her at the outset of our appointment that I wanted nothing negative to be said about chemo, maintaining my belief that having a positive attitude toward it made it more effective. What I wanted from her were some ideas about nutritional practices that I might integrate into my overall program of treatment. When she began to talk about the potential need to cut back on dairy products and meat and a variety of other foods, I balked.
"Give up cheese!?! I lived in Wisconsin for 9 years! I've got cheese in my blood!" I complained.
I really can't remember what else we talked about that day. Guess my mind had already closed itself off to whatever else she felt important to tell me. Giving up the kinds of foods that I liked so much seemed, at that point, too great a price to pay.
But now, back home from a less than totally successful program of treatment which my oncologist had called my last resort, I had no other options. Cancer was growing back quickly in my system. My pelvic bones were beginning to hurt again, and my limp was returning. I'd traveled every path that intersected in some way with conventional cancer treatment. My resume of therapies read like a medical textbook. I was now on the last page, with my life looking like it might be coming to a close. I gave the nutritional approach another shot.
Five weeks after I began a strict regimen of detoxification, diet and supplements under the guidance of a nutritional counselor, tests done by my oncologist revealed no trace of cancer! He was flabbergasted!
"When you returned from the transplant with cancer still in your marrow," he said, "I honestly thought you were doomed!"
A Vision Born
As my story has circulated through the cancer fighting grapevine around the country, more and more people have been calling to get the details of what worked for me. Several doctors locally have taken to giving out my phone number in hopes that my experiences might give practical help and emotional encouragement to their patients with cancer. As a result, and because of a sense of personal calling to influence our world in this way, my husband and I have begun our own non-profit organization called HealthQuarters. Our hope is to serve the information, education, and encouragement needs of fellow "cancer cousins". With them I share the lessons I've learned about fighting cancer that fill the pages of this book, namely:
Know Your Enemy
Cut Off Enemy Supply Lines
Rebuild Your Natural Defense System
Bring In Reinforcements
Maintain Morale
Carefully Pick Your Team of Special Advisors
