My husband drove me to my first "infusion," which is apparently the new term for chemotherapy. First I had to have blood drawn to make sure my white blood cell count was high enough to begin treatment. After the lab work, we met with the Patient Educator, who went over each of the drugs in the ABVD cocktail that I would be given.
She explained that I would experience nausea and hair loss, and that I COULD experience sore mouth, constipation, diarrhea, and fever. She emphasized that I should stay away from spicy or greasy foods if I wanted to avoid vomiting and stomach pain. Then she gave me some brochures for wigs and for a gel that could help save my eyebrows and eyelashes that could be purchased at a wig shop.
After we had been educated, they led me to the infusion room, where there was a long line of hospital recliners -- probably about 15 in a row -- all facing a nurses' station. Each chair was separated by a short curtain that could pulled so that you couldn't see the people on each side of you if you wanted privacy. My nurse Katherine expertly hooked up my IV into my right wrist and began giving me the premed drip. I don't remember what all she said was in there, but I do know there was some anti-nausea and some Benadryl. Not sure what else.
After they had given me a bag of liquids to hydrate my veins and the premeds, she "pushed" the first 3 chemo drugs. This means that she injected them by syringe into my IV instead of them dripping from the bag. This is because these drugs are so potent and dangerous that they absolutely cannot get outside the vein or they can cause lots of serious damage. So she had to make sure my veins didn't blow and that I didn't have any reaction to them. That all took about an hour.
Then the final drug, the D part of the cocktail, was given to me as a bag dripping into the IV. I could actually feel it burning up my arm into my bicep, so we had to dial it down and increase the amount of saline solution it was mixed with. It was a little scary to experience how potent that drug was... to actually feel it burning my vein. It just made it very real.
With that said, I can't write about my first chemo treatment. without mentioning two fellow cancer fighters that I met. The first one was Robin, a sixty-something breast cancer patient who was eager to share what she had learned so far with this newbie. She extolled the virtues of a port and showed me how easily her drugs were being administered into her chest without involving her arm veins at all. Then she talked to me about the importance of getting a good monofilament wig as she boldly whipped hers off and showed me her bald head. She was just so brave and vibrant that she made our morning at infusion seem so normal, like we were two strangers having a conversation in, say, a grocery store, discussing the value of one brand over another.
The other woman I met was in the chair to my left. I don't remember her name, mainly because it seemed that nurse Katherine was doing everything she could to prevent us from talking. Every time we moved the partition a little bit, she snapped the curtain closed again. And I know why. Robin was a model patient. The kind you want a cancer newbie to meet... upbeat, informative, engaging. But the woman on my left was the kind you DO NOT want a new infusion patient talking to. She whined and moaned and let out a string of "Oh Lords" every time Katherine touched her. And she was apparently supposed to bring a fanny pack of meds with her to every infusion and she had forgotten that. She was not the model patient, and as I said, Katherine did her best to keep her from influencing me. But every once in awhile, she would push the curtain aside and say, "How you doin', Miss Lady?" And I would smile and tell her I was doing just fine.
And I was. I did just fine during that first infusion treatment. It only lasted a few hours and then my hubby and I went to eat a large plate of pasta at the Olive Garden. Cause that's what I was craving for some reason.
All in all, it was not too bad.
Sunday, April 22, 2012
Staging
The next step after diagnosis was "staging," which was a series of tests to determine how advanced my cancer was and what areas of my body were affected. Because lymphoma is a blood cancer, Dr. Forero had cautioned me that it is often found in multiples areas.
So, first up was a CT scan with contrast dye, where they made me drink 2 cupfuls of awful yellow liquid and then be scanned in the donut. Then came the PET scan, which involved receiving an IV of something nuclear which was administered in a metal syringe and then being moved in and out of a long tube similar to an MRI. Next up was the lung function testing and an EKG of my heart to make sure I could withstand the chemo itself.
Finally, the dreaded bone marrow biopsy. Let me say first that I was terrified about this procedure based on what I'd read in other blogs. I took two Ativan pills, prescribed by my oncologist for this purpose, right before the biopsy, but that was my only sedation. I also had my Ipod handy so I could listen to music and drown out the sounds of what was being done to me. And, my husband sat at the end of the table by my head and let me squeeze his hand during the most painful part. That's how I got through it.
So here's how it works... I had to lie face-down on a regular exam table while the physician's assistant and the bone marrow tech prepped the site. Then they began numbing the site with Lidocaine and went to work. My husband said it looked like they inserted a tube in my lower back, right above the buttocks, and kept putting different instruments through the tube. All I know is, they cannot deaden inside the bone itself. So, when it comes time to pull out the bone marrow, YOU FEEL IT.
As the PA said, it feels like you are being kicked in the back by a horse. It is a very sharp, quick pain. But the good news was that it only lasted several seconds. So, I breathed deeply and I squeezed my husband's hand and I got through it. And then they had to repeat that two more times. Luckily, my doctor only required samples from one side of my hipbone.
Then they used what felt like a hammer and chisel to chip away a small piece of the bone itself. This didn't hurt so much as feel like pressure. Knowing what they were doing was slightly disconcerting though. My husband later said that he was glad I was listening to some relaxing Michael Buble during that moment. He said there was an audible crunch sounding.
All in all, the entire biopsy involved about ten to fifteen seconds of pain, which is why they don't sedate you. The cost and time and liability of anesthesia is not worth it when compared to how quickly the procedure is over.
One Hodgkins survivor that I talked to said that she thought the staging was the worst part of her entire cancer ordeal. I can certainly see how that would be true. Not knowing what to expect from each test and being stuck with needles several times made the whole process somewhat unpleasant, not to mention the bone marrow biopsy. So, if what she said holds true, then the worst is behind me.
And I can handle whatever lies ahead.
So, first up was a CT scan with contrast dye, where they made me drink 2 cupfuls of awful yellow liquid and then be scanned in the donut. Then came the PET scan, which involved receiving an IV of something nuclear which was administered in a metal syringe and then being moved in and out of a long tube similar to an MRI. Next up was the lung function testing and an EKG of my heart to make sure I could withstand the chemo itself.
Finally, the dreaded bone marrow biopsy. Let me say first that I was terrified about this procedure based on what I'd read in other blogs. I took two Ativan pills, prescribed by my oncologist for this purpose, right before the biopsy, but that was my only sedation. I also had my Ipod handy so I could listen to music and drown out the sounds of what was being done to me. And, my husband sat at the end of the table by my head and let me squeeze his hand during the most painful part. That's how I got through it.
So here's how it works... I had to lie face-down on a regular exam table while the physician's assistant and the bone marrow tech prepped the site. Then they began numbing the site with Lidocaine and went to work. My husband said it looked like they inserted a tube in my lower back, right above the buttocks, and kept putting different instruments through the tube. All I know is, they cannot deaden inside the bone itself. So, when it comes time to pull out the bone marrow, YOU FEEL IT.
As the PA said, it feels like you are being kicked in the back by a horse. It is a very sharp, quick pain. But the good news was that it only lasted several seconds. So, I breathed deeply and I squeezed my husband's hand and I got through it. And then they had to repeat that two more times. Luckily, my doctor only required samples from one side of my hipbone.
Then they used what felt like a hammer and chisel to chip away a small piece of the bone itself. This didn't hurt so much as feel like pressure. Knowing what they were doing was slightly disconcerting though. My husband later said that he was glad I was listening to some relaxing Michael Buble during that moment. He said there was an audible crunch sounding.
All in all, the entire biopsy involved about ten to fifteen seconds of pain, which is why they don't sedate you. The cost and time and liability of anesthesia is not worth it when compared to how quickly the procedure is over.
One Hodgkins survivor that I talked to said that she thought the staging was the worst part of her entire cancer ordeal. I can certainly see how that would be true. Not knowing what to expect from each test and being stuck with needles several times made the whole process somewhat unpleasant, not to mention the bone marrow biopsy. So, if what she said holds true, then the worst is behind me.
And I can handle whatever lies ahead.
Sunday, April 8, 2012
God Went Before Us
It was one week from the time we first heard the mention of lymphoma until the diagnosis was confirmed by a lymph node biopsy and pathology report. During that time, my family and I all began to come to grips with the possibility that I was about to battle cancer. And as we quietly shared our prayer request with our church family and friends, we kept hearing the name of one oncologist over and over.
Dr. Andres Forero at UAB Comprehensive Cancer Center. He was the man to see, we were told. But we were also warned that it might be weeks before we could get an appointment with him.
As soon as Dr. Han confirmed that it was in fact Hodgkins Lymphoma, I called Dr. Forero's office and asked to make an appointment. The woman on the phone asked me if I had ever been a patient at UAB or Kirklin Clinic. I told her I had not, but when she began to take my name and information she found that I already had a patient number. My current address and even my cell phone number were already in their system. Dr. Han's office must have already contacted them. Before I could even make the call, God had begun paving the way.
Dr. Forero's receptionist told me that my pathology report and Dr. Han's notes would have to be faxed over to their office and then the slides of my cells would be ordered and after all of that was reviewed, someone would call me back to schedule an appointment. I should expect to wait 3 to 4 days before even being contacted about an appointment, she told me. That was on Wednesday afternoon.
That day my father sent out an email to his Sunday school class, informing them that my diagnosis was in fact Hodgkins Lymphoma and that we were waiting to get an appointment with Dr. Forero. Well, folks, people began to pray and people began to make phone calls and God just kept going before us.
On Friday morning, less than 48 hours after receiving my diagnosis, Dr. Forero's patient care coordinator called me and said that, if I could be at Kirklin Clinic in an hour and a half, Dr. Forero would see me THAT DAY. Since we had expected to wait weeks, or at least until the following week to even get a call, I hurriedly arranged for my husband to watch the baby and my mom and I raced downtown to meet my oncologist.
When we got to his office, a nurse weighed me, took my vitals and then led me down a corridor to the exam room. As we walked down the hall, I noticed that every door stood wide open and every exam room was dark and empty. "Slow day today or has everyone gone to lunch?" I asked.
"No, no," she explained. "We don't have a schedule for today. Dr. Forero doesn't see patients on Fridays because he handles clinicals. But he came in to see you."
JUST ME. Because someone in that Sunday school class knew someone who knew someone who knew some bigwig at UAB Cancer Center and they brought my name to the attention of this renowned oncologist and he agreed to see me just 2 days after my diagnosis. Talk about an answer to prayer. Talk about God showing that He was not only WITH ME in this but he had gone before me to prepare the way.
Then to top it all off, when we met Dr. Forero, we loved him. LOVED HIM. He was so warm and positive and nurturing. He has a thick Columbian accent and he talks very fast, but he answered all of my many questions and gave us lots of information. He explained that we are going to do 12 rounds of chemotherapy because we are going for a cure. Even if the PET scans show that I am cancer-free after 6 treatments, we are going to do all 12. "No negotiation," he said. "You will get tired of coming here. You will grow to hate us. You will whine and complain about the treatment and you will want to quit. But you won't. Because your life depends on it."
It was a statement I'll never forget.
Then we talked about one of the most important things: Would I lose my hair? Yes, he told me unequivocally. I joked that I was going to take full advantage of my baldness and purchase a bunch of wigs in different styles. I might have long, brunette hair one day and short, spiky, red hair the next. I was determined to have fun with the hair loss.
To which Dr. Forero replied, "Giiiirl, I like your attitude! You are going to do this!"
And I thought to myself, Yes. Yes, I am.
Dr. Andres Forero at UAB Comprehensive Cancer Center. He was the man to see, we were told. But we were also warned that it might be weeks before we could get an appointment with him.
As soon as Dr. Han confirmed that it was in fact Hodgkins Lymphoma, I called Dr. Forero's office and asked to make an appointment. The woman on the phone asked me if I had ever been a patient at UAB or Kirklin Clinic. I told her I had not, but when she began to take my name and information she found that I already had a patient number. My current address and even my cell phone number were already in their system. Dr. Han's office must have already contacted them. Before I could even make the call, God had begun paving the way.
Dr. Forero's receptionist told me that my pathology report and Dr. Han's notes would have to be faxed over to their office and then the slides of my cells would be ordered and after all of that was reviewed, someone would call me back to schedule an appointment. I should expect to wait 3 to 4 days before even being contacted about an appointment, she told me. That was on Wednesday afternoon.
That day my father sent out an email to his Sunday school class, informing them that my diagnosis was in fact Hodgkins Lymphoma and that we were waiting to get an appointment with Dr. Forero. Well, folks, people began to pray and people began to make phone calls and God just kept going before us.
On Friday morning, less than 48 hours after receiving my diagnosis, Dr. Forero's patient care coordinator called me and said that, if I could be at Kirklin Clinic in an hour and a half, Dr. Forero would see me THAT DAY. Since we had expected to wait weeks, or at least until the following week to even get a call, I hurriedly arranged for my husband to watch the baby and my mom and I raced downtown to meet my oncologist.
When we got to his office, a nurse weighed me, took my vitals and then led me down a corridor to the exam room. As we walked down the hall, I noticed that every door stood wide open and every exam room was dark and empty. "Slow day today or has everyone gone to lunch?" I asked.
"No, no," she explained. "We don't have a schedule for today. Dr. Forero doesn't see patients on Fridays because he handles clinicals. But he came in to see you."
JUST ME. Because someone in that Sunday school class knew someone who knew someone who knew some bigwig at UAB Cancer Center and they brought my name to the attention of this renowned oncologist and he agreed to see me just 2 days after my diagnosis. Talk about an answer to prayer. Talk about God showing that He was not only WITH ME in this but he had gone before me to prepare the way.
Then to top it all off, when we met Dr. Forero, we loved him. LOVED HIM. He was so warm and positive and nurturing. He has a thick Columbian accent and he talks very fast, but he answered all of my many questions and gave us lots of information. He explained that we are going to do 12 rounds of chemotherapy because we are going for a cure. Even if the PET scans show that I am cancer-free after 6 treatments, we are going to do all 12. "No negotiation," he said. "You will get tired of coming here. You will grow to hate us. You will whine and complain about the treatment and you will want to quit. But you won't. Because your life depends on it."
It was a statement I'll never forget.
Then we talked about one of the most important things: Would I lose my hair? Yes, he told me unequivocally. I joked that I was going to take full advantage of my baldness and purchase a bunch of wigs in different styles. I might have long, brunette hair one day and short, spiky, red hair the next. I was determined to have fun with the hair loss.
To which Dr. Forero replied, "Giiiirl, I like your attitude! You are going to do this!"
And I thought to myself, Yes. Yes, I am.
Friday, April 6, 2012
Wait.... did you say "lymphoma?"
A couple of weeks after the birth of my daughter, I started having this horrible head-to-toe itching that felt like it was deep inside my skin. It was particularly worse at night, causing me to lie in bed clawing at my legs, arms, feet, belly, everywhere, so ferociously that I often drew blood. We called my OB, wondering if it could be somehow related to the pregnancy or the c-section. Was I allergic to the sutures they used? Was it just my hormones leveling out? Was it a complication of the epidural?
My OB ordered a blood test to check for cholestasis of pregnancy, which was negative, so they recommended I see a dermatologist. That visit led to another blood test, which revealed that I had an elevated white blood cell count. Despite that, the doctor suggested I follow a "dry skin regimen" which included a $17 bottle of bath oil (purchased from her office, of course), using fragrance and dye-free soap and detergent, showering less frequently and liberally applying lotion multiple times a day. None of these things worked and the itching grew worse. I even began to keep a fork beside my bed so I could really dig at the bottom of my feet.
After four unsuccessful visits to the dermatologist (including a skin biopsy), she referred me to an allergist. The allergist suggested that I take over-the-counter antihistamines twice a day and return in a month for skin tests. In the meantime, I began to wake in the middle of the night with chills, low-grade fever, night sweats and back and lower abdominal pain. After several nights of that, I headed to the nearby doc-in-the-box convinced I had a kidney infection. She apparently agreed and sent me home with a prescription for a week of antibiotics.
Only the antibiotics had no affect on the fever, night sweats, chills or the pain.
My husband called a buddy of his, an internist that he regularly played tennis with on Sunday afternoons. "She has a nasty kidney infection and these antibiotics just aren't strong enough," my husband told him. Dr. Michael Han agreed to fit me in that day. As I sat and told Dr. Han about all of my symptoms, I mentioned to him that I had also had persistent, intense itching for many months and that I felt like all of my problems were related. I felt like my body was under attack and that all of the symptoms were just manifestations of that. Of course, I believed that the attack was some sort of undetected infection relating to the c-section or epidural, something from the birth of my daughter.
Dr. Han ordered a CT scan to check for kidney stones since I still had back and lower abdominal pain that was not responding to medicine. I had no idea that 5-minute test would change my life.
The next day, Dr. Han called me to say that the CT scan had revealed enlarged lymph nodes in my abdomen and that it was "worrisome" to him. He explained that a possible explanation could be Lymphoma and then he asked me if anyone in my family had ever had cancer. They hadn't, so I quickly dismissed this possibility. After all, it seemed that cancer ran in families and no one in mine had ever been affected. My people tended to die of heart disease or stroke, but never cancer. So I asked him what else could be causing the enlarged lymph nodes.
"Well, a benign possibility could be infection," he said cautiously, and I immediately thought, Yep! Just what I had suspected all along. Then Dr. Han explained that he wanted me to have a biopsy of the lymph node and he asked if, since he and my husband were friends, if he could talk to him about our conversation. I quickly agreed, knowing that I would have all kinds of follow-up questions after I processed everything. And I thought it was nice of him to be available if Tim wanted to hear it straight from him.
Despite the fact that Dr. Han clearly said the word "LYMPHOMA," I was more focused on the benign possibility. I was only mildly thrown by the mention of cancer. That is, until two things happened. First, I did a little googling about Lymphoma and there in black and white were a list of all my symptoms: fatigue, fever, chills, night sweats, itching all over the body that cannot be explained. UH OH. And then the second thing that happened was that, instead of allowing my husband to call him with any questions, Dr. Han called him.
I heard my husband say, "But it COULD be infection, right?" I remember that I was cooking dinner and I whipped my head around to see the look on my husband's face. And I just knew. I knew that Dr. Han was kindly but unequivocally telling him what we were really looking at. And it wasn't infection.
Although I had barely grasped the gravity of all, was in fact in complete denial about the possibility of getting cancer, that call marked the turning point for us. Our lives -- at least for the foreseeable future -- would never be the same.
My OB ordered a blood test to check for cholestasis of pregnancy, which was negative, so they recommended I see a dermatologist. That visit led to another blood test, which revealed that I had an elevated white blood cell count. Despite that, the doctor suggested I follow a "dry skin regimen" which included a $17 bottle of bath oil (purchased from her office, of course), using fragrance and dye-free soap and detergent, showering less frequently and liberally applying lotion multiple times a day. None of these things worked and the itching grew worse. I even began to keep a fork beside my bed so I could really dig at the bottom of my feet.
After four unsuccessful visits to the dermatologist (including a skin biopsy), she referred me to an allergist. The allergist suggested that I take over-the-counter antihistamines twice a day and return in a month for skin tests. In the meantime, I began to wake in the middle of the night with chills, low-grade fever, night sweats and back and lower abdominal pain. After several nights of that, I headed to the nearby doc-in-the-box convinced I had a kidney infection. She apparently agreed and sent me home with a prescription for a week of antibiotics.
Only the antibiotics had no affect on the fever, night sweats, chills or the pain.
My husband called a buddy of his, an internist that he regularly played tennis with on Sunday afternoons. "She has a nasty kidney infection and these antibiotics just aren't strong enough," my husband told him. Dr. Michael Han agreed to fit me in that day. As I sat and told Dr. Han about all of my symptoms, I mentioned to him that I had also had persistent, intense itching for many months and that I felt like all of my problems were related. I felt like my body was under attack and that all of the symptoms were just manifestations of that. Of course, I believed that the attack was some sort of undetected infection relating to the c-section or epidural, something from the birth of my daughter.
Dr. Han ordered a CT scan to check for kidney stones since I still had back and lower abdominal pain that was not responding to medicine. I had no idea that 5-minute test would change my life.
The next day, Dr. Han called me to say that the CT scan had revealed enlarged lymph nodes in my abdomen and that it was "worrisome" to him. He explained that a possible explanation could be Lymphoma and then he asked me if anyone in my family had ever had cancer. They hadn't, so I quickly dismissed this possibility. After all, it seemed that cancer ran in families and no one in mine had ever been affected. My people tended to die of heart disease or stroke, but never cancer. So I asked him what else could be causing the enlarged lymph nodes.
"Well, a benign possibility could be infection," he said cautiously, and I immediately thought, Yep! Just what I had suspected all along. Then Dr. Han explained that he wanted me to have a biopsy of the lymph node and he asked if, since he and my husband were friends, if he could talk to him about our conversation. I quickly agreed, knowing that I would have all kinds of follow-up questions after I processed everything. And I thought it was nice of him to be available if Tim wanted to hear it straight from him.
Despite the fact that Dr. Han clearly said the word "LYMPHOMA," I was more focused on the benign possibility. I was only mildly thrown by the mention of cancer. That is, until two things happened. First, I did a little googling about Lymphoma and there in black and white were a list of all my symptoms: fatigue, fever, chills, night sweats, itching all over the body that cannot be explained. UH OH. And then the second thing that happened was that, instead of allowing my husband to call him with any questions, Dr. Han called him.
I heard my husband say, "But it COULD be infection, right?" I remember that I was cooking dinner and I whipped my head around to see the look on my husband's face. And I just knew. I knew that Dr. Han was kindly but unequivocally telling him what we were really looking at. And it wasn't infection.
Although I had barely grasped the gravity of all, was in fact in complete denial about the possibility of getting cancer, that call marked the turning point for us. Our lives -- at least for the foreseeable future -- would never be the same.
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