Regarding my persistent pain, it feels as if I’ve undergone a battery of tests this week, when, in actuality, I’ve only had a couple.
I saw my OB/GYN on Monday, but the appointment was for my previously scheduled annual exam — nothing new, nothing serious. I mentioned the CT scan I’d just had done and gave him a copy of the report. He felt as sure as I did that the “mass” on my right ovary was merely a developing follicle. “I just saw your ovary with my own eyes not four months ago,” he said, but he agreed it would be prudent to follow-up with a sonogram in three weeks. He said if my cycle resumes within the next couple of weeks, our theories would have been true.
Today, I had an endoscopy and colonoscopy done. I was really quite nervous about this test — not because of any potential findings, but rather just because of the humiliation factor. I am really self-conscious about two things: my feet and my bowel habits. The risk of anesthesia and the potential pain of the procedure, those things were of no concern to me, but to know that a room full of strangers was about to intimately acquaint themselves with my bowels and their business was deeply embarrassing.
I stuck close to home on yesterday to complete the bowel prep regimen — a half-gallon of Gatorade mixed with two weeks worth of laxative solution. The mixture had to be consumed in total within a two-hour period as 8 ounce portions every ten to fifteen minutes. That regimen coupled with a clear liquid fast for twenty-four hours made for an interesting afternoon. The clear liquid fast was followed by an absolute fast from midnight until the time of the procedure. I realized while I was fasting that I have a real tendency to eat absent-mindedly. I more than one time had to focus on the process of fasting to keep myself from putting something into my mouth. It was a challenging day, to say the least!
We decided the easiest way to manage the day was to have Gracie spend the night with a neighbor and to have me drive myself to the surgery center. James took the day off work to help take care of the kids and to transport me home from the procedure. Everything for Bub and Bryssa was prepped and ready to go to make his day that much easier. I left the house at 5:30 A.M., checked in at 6:15, and began the procedure around 7:30 A.M. I was the youngest patient in the building.
The doctor was very young and very handsome, which made me feel that much more phobic. But he was also professional, very experienced, and had a superb bedside manner. Though he felt hopeful we wouldn’t find anything during the exam, he reassured me regarding the fact that I was having the right tests done for the pain I was describing. He explained I could be dealing with any number of things and that these tests were a good place to start figuring things out. “Better safe than sorry,” he stated.
An I.V. was inserted and I was wheeled to the surgery suite. My questions about post-op breastfeeding were answered and a bite guard was inserted in my mouth and strapped around my head. My bracelet information was confirmed and the anesthesiologist wished me a nice nap. I wondered if someone might ask me to count down from ten, then I felt my eyes roll a bit as I drifted away.
Murmuring. A hand-off report: polyp, left side. Bright lights. Recovery.
The doctor explained my endoscopy was clear. He took some tissue samples from the lining of my stomach. Maybe I had a bacterial infection. Maybe that’s why I’ve been having pain. Overall, though, that portion of the exam was unremarkable and I shouldn’t expect an answer from it.
As for the colonoscopy, he found a polyp — a single “pre-cancerous” polyp, large in size per his description, a real surprise to say the least. He said if I would have waited until I was fifty years old to have my first colonoscopy (which is common protocol), I would have most certainly ended up with colon cancer. The doctor seemed almost giddy that he found that polyp, but he seemed genuinely happy to tell me that he got the entire thing out. He said he’s seen more cases of colon cancer in people too young to have it. He said he diagnosed two more cases just this month. The polyp has gone to the lab to be biopsied, but he assured me at this point I have nothing to be concerned about. I do, however, have to have a colonoscopy done now once every five years and am to be aware of and report immediately any change of habits or symptoms.
When I asked him if this polyp was the cause of my pain, he said it wasn’t. He said even though it was a significant find, the polyp was not the cause of my pain. Finding it when we did was merely a bonus. In general, polyps aren’t known to cause pain, but regardless of pain potential, this polyp was in the lower portion of my abdomen while the pain I’m experiencing is in the upper portion of my abdomen. My colon was clear in the area where I feel pain. He went on to say what I may be dealing with could be something as simple (and as challenging to manage) as Irritable Bowel Syndrome. He said that was often the diagnosis they attach to non-specific abdominal pain, that the disorder can present with variation in bowel habits or merely as abdominal pain, but I don't know -- that seems like a cop-out to me. He offered a daily medication to assist with pain and symptom management, but when I reminded him that I’m nursing, he suggested I avoid medication. At this point, nothing more than a dietary change is in order: a high fiber diet to both combat what may or may not be IBS and to reduce my risk for cancer.
Thursday, November 19, 2009
Regarding my persistent pain, it feels as if I’ve undergone a battery of tests this week, when, in actuality, I’ve only had a couple.
Posted by Amanda at 3:39 PM
Friday, November 13, 2009
As the night progressed last night, James and I discussed our theories about the pain, and we pondered the purpose of a face-to-face consultation. In the midst of discussion, James insisted time and again that I could not have pancreatic cancer. “You’re not male, you’re not a smoker, you don’t have jaundice,” and on he continued. I still don’t know exactly how it happened — I don’t know if I asked or if he just blurted it out — but at some point in all of his insisting, he mentioned that if I had pancreatic cancer, I’d probably only have three months left to live. (His theory was based on the fact that pancreatic cancer is called “The Silent Killer,” and that by the time a patient typically feels pain, the cancer has moved into other areas of the body.) I suppose the look of shock on my face gave me away. Panicked, he asked, “You didn’t know that?”
I did not know that.
Because of my reproductive history and my ability to learn a little bit about a lot of things, I had been deliberately avoiding Google. I had done just enough research to know my appendix was not located on my left side and that I was probably safe to see a doctor in the office rather than heading into the ER. With the new prospect of three months or less, though, I could do nothing but Google. For every reason James saw that I couldn’t have pancreatic cancer, I saw a reason that I could: the pain was in that certain spot, the pain did increase after I ate or when I laid down, and so on. For every missing risk factor that led him to believe I was safe convinced me otherwise: I am overweight, I do eat a typically high-fat diet, etc. Each click of the mouse was to me the creak of a coffin lid.
After mere moments of diligent research, I was drowning in a sea of tears. Brystol mistook my gulps and sobs for the silly noises I make at her and met me with smiles and coos, and that broke my heart further. Imagining this baby, this baby I longed for, growing up without knowing me broke me into a million pieces. With Bub and Gracie sleeping upstairs, James and I sat with her as I cried. I nursed her to sleep as I cried. James held me as I cried, missing moments and years and love and misery and wonder and the mundane. Life. Before I knew it, a new day dawned and there was neither a time nor a place for tears — business as usual.
All morning I thought of the last things. This is the last time I’ll brush my teeth before I’m handed my death sentence. This is the last time I’ll buckle my baby into her car seat before my death sentence. This is the last time I sit in traffic before my death sentence. My appointment was at 9:15 A.M. I wondered how the world would look at 9:30.
As we drove, James and I talked about non-serious stuff (like the traffic) and about serious stuff (like about how I could fight cancer, how I don’t have to be a statistic, how I beat the bad odds). We arrived at the office and prayed again. Brystol tooted on my leg as I held her, and Gracie, still not fully recovered from her cold, leaned again me, lingered. I found it humorous that the doctor I waited to see hadn’t yet been given space in the grown-up side of the practice — I sat in a pediatric office at what might have been the end of my life as I knew it. Tinkerbell flitted about on the TV screen and a painted puffer fish stared me down from across the room. This is my last time to see a painted puffer fish before my death sentence.
James and I were escorted to an empty exam room in the furthermost corner of the practice while Gracie stayed in the waiting room to watch Tinkerbell. She thought we were doing her a favor by allowing her to stay behind, but in reality, she bestowed the favor. We both tried to play it cool, but I could see the panic in his eyes and he could hear it in my voice. I could hear voices passing back and forth behind the door of the exam room. I listened for the doctor, I hung on every word, in my heart I plead for mercy. For a moment, I was a prisoner, incarcerated, waiting out the walk on death row. Mercy, mercy.
Brystol was nursing as the doctor came in. I wasn’t even sure if she was hungry when I put her to the breast, I only knew I’d probably be more inclined to hold myself together if my crumbling meant dropping her. The doctor greeted me, then asked, “So, are you still having the pain in your side?” Was she joking? “Of course,” I replied, “we haven’t done anything to fix it.”
Without acknowledging that fact, she went on to the test results. “There are no masses in your organs. Your pancreas looks good, your liver, your spleen. Everything looks pretty great.”
She then went on to say, “We did see something on your right ovary, a tissue density of some sort. It could be a cyst, it could be a tumor. You’ll need to have an ultrasound to be sure.” We discussed the rest of the findings and the plans for more testing. The ovarian issue is likely a maturing follicle thanks to my more-frequently sleeping, less-frequently nursing little baby. The pain in my left side is still undefined. The plan at this moment: to have an endoscopy and a colonoscopy to look for ulcers, plaque, blockages. If none of those issues are what ails me, the doctor would like me to stop nursing for a week or more while I take a stab at various muscle relaxants and pain medications, and that’s not a plan I’m at all comfortable with.
At this point, I just have to deal with the pain. Monday, the OB/GYN will check the right ovary to see if my ovulation theory is correct. On Wednesday, I go to the surgery center for two hours of paperwork and waiting for 1/2 hour of poking and prodding. By Thursday, I hope for some answers. Meanwhile, I feel as though I’ve been born again.
No one handed me my death sentence.
Posted by Amanda at 3:32 PM
Thursday, November 12, 2009
I had the CT scans done yesterday. The process was very smooth and very fast. The tech talked my ear off the entire time, but even with all of his gabbing, maybe seven minutes passed before both tests were done. I had to drink 900 mL of a contrast fluid — Barium, I think he said — so my bowels would show up. I had to take an IV of contrast fluid so my veins and organs would be revealed.
The tech said his entire day was off because his first patient had an anxiety attack about the IV of contrast fluid. At first I thought, “How curious,” but then it dawned on me that he had just informed me that as the fluid raced through my veins, they would feel like they had been lit on fire, my mouth would taste like metal, and my bladder may or may not spontaneously empty. If I was allergic to the IV contrast fluid, all of that would be immediately worse. I had to remind myself that the concerns of the first patient were valid, reasonable.
In stressful situations, I’m the one who emotionally disconnects.
Overall, I felt fine after the test — a little warm, hot flash warm perhaps, but really not bad. The remainder of the day, however, was challenging since my confused little nursling wasn’t allowed to latch on. (There’s some question about the iodine passing through breast milk and harming the baby.) I had nine bottles of expressed milk at home, but I picked up a can of formula while at the market on the way home. I wasn’t convinced I’d stored enough breast milk to last her the entire 24 hours, then come to find out, what I had stored had not even thawed after a night in the refrigerator. I was happy, as was she, to have some food at the ready when we got home.
I was unconcerned about her taking bottles for nourishment initially. She’s taken up to two bottles in a row before without significant complaint. I was concerned that she would have issues with the bottle when it came to comfort, and that she did. She took the first two feedings fine, but by the third she wriggled and writhed around in my arms. She turned her mouth away from the artificial nipple and sought out any bare skin she could get her lips on. She finally found comfort after I swaddled her flailing body and held her tightly, pacifier wedged in her mouth, nose touching my arm, the scent of me filling her nostrils. The night was long and rough, but today, precisely 24 hours after the IV needle went into my arm, she was latched on. She couldn’t have been more pleased that she’s allowed to nurse, and I’m pleased to see my contented little baby again instead of the little one who seemed so lost only yesterday.
As the day progressed, I began to wonder what sort of blood work had been run in the office. The nurse left a voice mail on my cell phone saying it had all come back normal, but as far as I knew, they were testing me to ensure I wasn’t some pill head looking for a fix. I called the office to see what tests had been done: a CBC, CMP, blood sugar tests and some others. “Everything looks great on your blood tests,” the nurse said. “But about your CT scan,” she continued, “the doctor would like you to come in for a follow-up.” I asked if the nurse could just give me some results over the phone. “No,” she said, “the doctor would like to see you face-to-face.”
My previously scheduled follow-up appointment was set for Tuesday, but I had just moved it to Monday because James was planning to take a day off for me to visit my Tulsa friends. At the moment, I’m sick with congestion, a horrible cough, and an on-again/off-again fever, so I just canceled my travel plans. I moved the doctor’s appointment to Monday only a couple of hours before my conversation with the nurse, so I asked her if I should just keep that appointment, or come in sooner.
“Um, I think you’ll need to come in sooner,” she said.
“Do you think I need to come in today, then?” I asked. “What do you mean by sooner?”
She tried to work me into the day’s schedule taking into account Matthew’s return from school, but she couldn’t make it happen. Instead, she booked me into the first available appointment for tomorrow.
In the movies, the only time a doctor calls a patient in for a consultation is when the news is really, really bad. To know this doctor wants to see me face-to-face is terrifying. James is coming with me to the appointment, as are Gracie and Brystol, and I have a feeling that the news is not going to be good. Whatever it is, I hope I don’t scare Gracie with my reaction, and I hope I don’t throw up.
I feel like I might throw up right now.
Posted by Amanda at 3:23 PM
Tuesday, November 10, 2009
I am afraid.
I have a pain in my left side — a burden that I’ve carried for three months easily, a burden that is now unyielding. I experience such intense pain that sometimes I am overcome by nausea, or my eyes flutter a bit and I’m sure I’m doomed to faint. I told my mother about the pain and was met with information about her foster child and inquiries into my holiday plans. I told my husband about my pain as a bit of a cry for help, I think — help to find the right sort of medical treatment, help with the children so the treatment could be sought. Instead of sympathy, I get statistics.
I feel very alone in my fear.
Tomorrow, I undergo an abdominal CT scan. I am afraid of going to the doctor and hearing that this pain that plagues me is a plague that will kill me.
I’m not at all afraid of death, but rather I am afraid of the wake that my death will create. I’m afraid of my children bearing an unbelievable burden of grief with no one (no one like me, at least) around to help them process it.
As for tomorrow, I hope there will be answers. I hope someone will see something that can be removed or repaired or replaced. I hope there is need for neither sympathy nor statistics. I hope someone makes promises about this pain going away. I long to look into the face of this fear and laugh.
Posted by Amanda at 3:21 PM