Okay, so here's how hectic the last two weeks have been. Ready? Here goes....
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May, 2008: We know now that I unsuspectingly had cancer for 2-8 months at this point. Here's where the fun begins.... |
Saturday, September 6, 2008:
Itook my regular morning vitamin and the pain was very intense for several hours. When I instinctively reached up to my neck to soothe the sore spot, I noticed a large lump above my collarbone that was definitely NOT there the day before. I later found out that it measures 6" W by 3" H. I assumed it was a knot from some bizarre sleeping position (not unlikely since I’m an active dreamer) but decided to keep an eye on it over the weekend before jumping to conclusions.
Itook my regular morning vitamin and the pain was very intense for several hours. When I instinctively reached up to my neck to soothe the sore spot, I noticed a large lump above my collarbone that was definitely NOT there the day before. I later found out that it measures 6" W by 3" H. I assumed it was a knot from some bizarre sleeping position (not unlikely since I’m an active dreamer) but decided to keep an eye on it over the weekend before jumping to conclusions.
Monday, September 8th:
The lump was still standing at attention and I therefore decided to schedule an appointment with my primary doctor for 2:00 that day. The Medical Assistant took my vitals, asked the requisite questions, and then brushed my hair back to check the ugly protrusion. She very quickly excused herself and, within record time (Dr. Gonzalez is thorough with her patients and is known to take her time; her patients should therefore expect to wait awhile but receive quality attention when it’s their turn), returned with the doctor. After poking, prodding, and inquiring about my (seemingly benign, previously unreported) symptoms of ongoing low-grade fever, chills, and fatigue, Dr. Gonzalez's exact words were: "I don't like that thing on your neck. I don’t like it at all....I'm afraid it's lymphoma. We need to get you to the hospital for a biopsy today or tomorrow." Within 30 minutes I had an appointment and directions in hand for the next day. I proceeded to get very drunk later that night. I think I made some phone calls too, but I can't be certain.....
The lump was still standing at attention and I therefore decided to schedule an appointment with my primary doctor for 2:00 that day. The Medical Assistant took my vitals, asked the requisite questions, and then brushed my hair back to check the ugly protrusion. She very quickly excused herself and, within record time (Dr. Gonzalez is thorough with her patients and is known to take her time; her patients should therefore expect to wait awhile but receive quality attention when it’s their turn), returned with the doctor. After poking, prodding, and inquiring about my (seemingly benign, previously unreported) symptoms of ongoing low-grade fever, chills, and fatigue, Dr. Gonzalez's exact words were: "I don't like that thing on your neck. I don’t like it at all....I'm afraid it's lymphoma. We need to get you to the hospital for a biopsy today or tomorrow." Within 30 minutes I had an appointment and directions in hand for the next day. I proceeded to get very drunk later that night. I think I made some phone calls too, but I can't be certain.....
Tuesday, September 9th:
I was admitted at 9:00 to North Central Baptist Hospital accompanied by a family friend (thank you Sheri!). They drew about 20 (okay, 6) vials of blood, hooked me up to a bunch of monitors, and started an IV, then left me to stew in my anxiety for about 3 hours. I was eventually taken to CT, then led to a very scary room with lots of screens, probes and.....my personal favorite....a sterile tray with a cannula, scalpel, many needles, and oxygen mask in case I decided to hyperventilate. Before the doctor walked in, the ultrasound technician worked her magic (and yes, my tumor remotely resembled a fetus on the screen), and said, "Oh that's just fluid build-up. I bet this is nothing. I see it all the time." As I attempted to hop off the bed and explain that we should just reschedule this little shindig for a later date after my CT results come in and they deem it ABSOLUTELY NECESSARY, the interventional radiologist walked in and said, "what's this I hear....you're trying to leave?" I repeated my logic to her, to which she replied, "Oh honey. Your CT results did come back. You have enlarged lymph nodes all throughout your chest as well as your neck. I don't like the looks of what I saw and I'm afraid of this being lymphoma....." followed by gibberish...... then, "I absolutely can't let you leave. This needs to be done." Within minutes, the biopsy was underway and the doctor took 6 "hefty" samples (as she put it when she marveled at her handiwork). The worst part, by far, were the 5 lidocaine shots; after I was numb I only felt tugging. When it was over, we waited for pathology to report back regarding whether or not the samples were sufficient (and thus she could close me up and remove the sterile field). After what seems like an eternity, the phone finally rang in the room and the doctor spoke with the pathologist to confirm that the procedure was, indeed, over. After hanging up, she took my hand and explained, "The pathologist said we won't have the final report until later in the week, but he told me 'the report is really just a formality. I'm pretty sure I'm looking at Hodgkins Disease.'" While trying to mentally digest that tidbit, she proceeded to explain that the treatment is chemotherapy and radiation and that my young age is really a blessing....blah, blah, blah...... I was taken back to my bed where a tray of absolutely vile hospital food was waiting for me (Honestly….what the hell are hospitals thinking trying to poison their own patients???). After breaking the news to my mom over the phone (she didn't take it well), the doctor monitored me and my outrageous blood pressure for an hour and I was sent home around 2:00.
Later that night, I proceeded to medicate with liquid Prozac (read: wine) once again and then call a close friend of mine who happens to be a doctor. While Tom is now a highly respected trauma physician, he spent many years as a beloved pediatrician (and my pediatrician, mind you) in the very position to refer such questionable conditions as mine to specialists. I knew he’d be a good person to talk to as both a friend and doctor. I explained the sequence of events and his response was a long pause, followed by: “So the lump appeared overnight? That quickly, huh? That’s never good.” This is where, to this day, I become flummoxed. Wouldn’t a malignant tumor appear little by little, over a period of years, months, or—at the very least—weeks whereas a knot might materialize instantaneously? I expected Tom to reassure me that the whole day’s production was a necessary measure but the tissue samples would likely prove to be benign. Instead, just like the interventional radiologist, he started preparing me for the long road ahead. “You’re looking at an 80% cure rate but it’s not going to be easy. Get ready for a tough fight. If anyone can do it though, I know you can.”
Wednesday, September 10th: Early the next morning Dr. Gonzalez called to ask how I was feeling after the biopsy. When I told her what the radiologist and pathologist both said, she asked my permission to make an oncology appointment for me for Friday. While she offered to refer me anywhere I chose, she suggested a specific oncologist for her youth, energy, aggressive nature, and because both, like me, this doctor prefers straight talk. I told Dr. Gonzales that I respect her opinion and will go wherever she recommends. Later that day, Dr. G called again to tell me that she consulted with the oncologist, Dr. Wilks, and they both agreed that I should come in Thursday instead of Friday due to the seemingly aggressive nature of the tumor. Mind you, I'm still not ABSOLUTELY CONVINCED that I have cancer without confirmed test results so agreeing to that was not easy (yeah, yeah, I’ll go and I’ll see what she has to say. Whatever….) Later that afternoon Mama Jackie arrived to play Mommy and 24/7 Nurse. I love her.
Thursday, September 11th:
Since my oncology appointment wasn't until 3:00, Mom and I meandered around Target, painted our nails while pretending to watch ridiculous court TV shows, half-heartedly feigned sipping smoothies, and generally tried to pass the time without killing random people for walking too slowly or chewing gum too loudly. We arrived at the office around 2:30 and finally met Dr. Wilks at 3:30. We waited, waited, and waited some more as I chewed through my nailbed and my mom obsessively straightened her clothing.
Since my oncology appointment wasn't until 3:00, Mom and I meandered around Target, painted our nails while pretending to watch ridiculous court TV shows, half-heartedly feigned sipping smoothies, and generally tried to pass the time without killing random people for walking too slowly or chewing gum too loudly. We arrived at the office around 2:30 and finally met Dr. Wilks at 3:30. We waited, waited, and waited some more as I chewed through my nailbed and my mom obsessively straightened her clothing.
“Doesn’t she know this is torture?” She asked, rubbing my hand raw. “I know,” is all I could muster. Finally, this surprisingly commandingly woman walked in and said, “Hiiiii! I’m Dr. Wilks! Who’s the patient???”
“I am,” I said, standing and smiling.
She hugged me and said, “You’re so young!!! You’re beautiful! They didn’t tell me how beautiful you are! Dr. Gonzalez called and told me that she had a patient for me that she felt really connected to and that she thought I’d really relate to. Just one of THOSE you bond with…”
Okay, I liked her immediately.
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| Sharon Wilks, MD |
One of the nurses walked me around the corner to a standard procedure room. My mom asked if she could stay with me and they said that they usually require visitors to leave the room. Now I realize that it is because of the seemingly archaic nature of the procedure: boring a hole through skin, muscle, tendons, and finally into the depths of bone with a FAT needle that is twisted—corkscrew fashion is brutal. No parent wants to witness that. No parents, of course, save Jackie Brannon, former respiratory therapist and hands-on ER trauma assistant. With reservation, they told her she could stay if she didn’t cause a disruption. I suddenly realized that my mom was unbuttoning my pants and exposing my ass.
Yes, the bone marrow aspiration ABSOLUTELY SUCKED. It was perhaps the worst thing I have ever experienced and it took several long minutes. I remember Dr. Wilks saying, “Okay, we got it,” and I perked up and said, “It’s done???” She replied, “Not yet, honey. I just got in. Give me a minute. I want to make sure I get a good sample so we don’t have to do it again.” The pain became overwhelming and I began quietly sobbing, tears streaming down my face. My mom stood on the other side of the bed stroking my hand and soothing me, but every second was unbearable. I am at a loss for words in describing the pain of a bone marrow biopsy and I still get nauseous when I think about the inexplicable sensation. I am literally still sore in that particular buttock region. I vaguely recall being wheeled out by a nurse, then peeled from the car and put into bed by my mom that afternoon. Weeks later, Dr. Wilks relayed that I became very chatty (actually, she said that I “wouldn’t shut up” once medicated), and that she nearly had to take me out with a baseball bat before beginning the procedure. Ha!
Friday, September 12th:
SURPRISE!!! While under the influence of controlled narcotics yesterday, Dr. Wilks had informed me (er, my mom) that my intensive chemo regimen would necessitate a mediport and that my surgery was scheduled for 9/12—the very day after my hellacious bone marrow procedure. My mom drove me to the hospital and I was admitted at 2:00 into outpatient surgery. Since I was refused food or drink for a full day, they couldn't find any veins in my arms, hands, or feet. My mom massaged my arms and they placed hot towels around them until a vein graciously decided to make an appearance. Finally, I was wheeled into surgery and given FANTASTIC "margarita meds." I heart that anesthesiologist, even though he said that I was not, in fact, a cheap date and that it took a surprising amount of drugs to put me under (as was made evident by my chatty nature). Damn! I’m hearing this a lot lately! A split second later (or--in sober real people time--about 45 minutes later) I was being wheeled back into my room and a nurse, under strict orders from my mom, was bringing me diet coke and water. :) We got home around 7:00. The port, placed midway between my right breast and collarbone (the round reservoir has a catheter attached: The catheter is snaked into the superior vena cava), is visible under my skin and I can totally feel it when I touch that area.....very odd sensation. The pain that night wasn't so bad (Thank you, Darvocet), but the next three days were pretty awful. I couldn't use my right arm/hand for awhile and my righthand fingers would spastically twitch--something about the nerves being irritated during surgery and having to adjust to a new foreign body. Regardless, I am comforted by the port since that is the place from which all my lab tests and chemo will be drawn/infused. Two ugly scars remain, yes, but no endless needle sticks or collapsed veins to worry about.
SURPRISE!!! While under the influence of controlled narcotics yesterday, Dr. Wilks had informed me (er, my mom) that my intensive chemo regimen would necessitate a mediport and that my surgery was scheduled for 9/12—the very day after my hellacious bone marrow procedure. My mom drove me to the hospital and I was admitted at 2:00 into outpatient surgery. Since I was refused food or drink for a full day, they couldn't find any veins in my arms, hands, or feet. My mom massaged my arms and they placed hot towels around them until a vein graciously decided to make an appearance. Finally, I was wheeled into surgery and given FANTASTIC "margarita meds." I heart that anesthesiologist, even though he said that I was not, in fact, a cheap date and that it took a surprising amount of drugs to put me under (as was made evident by my chatty nature). Damn! I’m hearing this a lot lately! A split second later (or--in sober real people time--about 45 minutes later) I was being wheeled back into my room and a nurse, under strict orders from my mom, was bringing me diet coke and water. :) We got home around 7:00. The port, placed midway between my right breast and collarbone (the round reservoir has a catheter attached: The catheter is snaked into the superior vena cava), is visible under my skin and I can totally feel it when I touch that area.....very odd sensation. The pain that night wasn't so bad (Thank you, Darvocet), but the next three days were pretty awful. I couldn't use my right arm/hand for awhile and my righthand fingers would spastically twitch--something about the nerves being irritated during surgery and having to adjust to a new foreign body. Regardless, I am comforted by the port since that is the place from which all my lab tests and chemo will be drawn/infused. Two ugly scars remain, yes, but no endless needle sticks or collapsed veins to worry about.
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| Mediport |
Monday, September 15th:
We took my TEN prescriptions to CVS to be filled whereupon I had the first of two nervous breakdowns when I realized that my insurance company makes me pay upfront and THEN get reimbursed after 9 months and 900 phone calls/claims/questions/battles later. Sitting in the little plastic orange chairs to the side of the pharmacy, the pharmacist found it necessary/appropriate to walk my Rx's out to me and hand me the bill himself. Had I purchased every Rx that I submitted, my total would have been $650. I held off on 2 of them and....let's just say.....I saved myself some lunch money. Needless to say, that receipt induced the second nervous breakdown. I have since transferred my Rx's after researching that I can save $200/month with Wal-Mart.
Tuesday, September 16th:
Chemo Day. My doctor's appointment at the clinic was scheduled for 10:00 and chemo for 10:30. Because it was my first time and I was a chemo virgin, they took awhile orienting me to the process and introducing me to various people such as the American Cancer Society representative and the dietician who specializes in cancer patients. My chemo started around 11:30 and was supposed to take 2 hours. HOWEVER, of the four chemo drugs, I had an awful allergic reaction to the fourth and caused quite a stir. I was also on a sedative (highly encouraged for the first round--Thank you, Ativan!) so I don't have the best recollection, but I do recall my lips swelling to rival Angelina Jolie's smackers, my body breaking out into hives, and (from what I'm told), my eyes turning red and glassy. Dr. Wilks told me that I'd have to be admitted overnight for observation if they couldn't get it under control and, after about two hours and 1/2 gallon of a benadryl/steroid cocktail, everything calmed down. Instead of getting home at 2:00 as planned, we left at 5:30.
Chemo Day. My doctor's appointment at the clinic was scheduled for 10:00 and chemo for 10:30. Because it was my first time and I was a chemo virgin, they took awhile orienting me to the process and introducing me to various people such as the American Cancer Society representative and the dietician who specializes in cancer patients. My chemo started around 11:30 and was supposed to take 2 hours. HOWEVER, of the four chemo drugs, I had an awful allergic reaction to the fourth and caused quite a stir. I was also on a sedative (highly encouraged for the first round--Thank you, Ativan!) so I don't have the best recollection, but I do recall my lips swelling to rival Angelina Jolie's smackers, my body breaking out into hives, and (from what I'm told), my eyes turning red and glassy. Dr. Wilks told me that I'd have to be admitted overnight for observation if they couldn't get it under control and, after about two hours and 1/2 gallon of a benadryl/steroid cocktail, everything calmed down. Instead of getting home at 2:00 as planned, we left at 5:30.
Wednesday, September 17th:
One thing I learned very quickly was that chemo is toxic, chemo is poisonous, and chemo is strong. My treatment team urged me time and again to drink as much water during and after chemo as possible in order to flush it out of my system ASAP. Unfortunately, my first post-chemo day was spent fasting for an evening PET scan. For the last time I insist: They should NOT do fasting tests in the afternoon! However, that was the only time available on such short notice. The PET scan is also important because it's essentially a full-body image that shows if/where the cancer has spread. So, while I comprehend the logistics and immediacy behind it, it did not make STEWING IN CHEMO POISON the next day any easier. I couldn't move. I tried to take a regular shower but ended up sitting on the shower floor instead. After toweling off I took a nap. After dressing I took a nap. I'm not talking about a "wow, what a week....I could use a rest" type of fatigue, but a bone-weary lethargy. Nothing could prepare me for that type of depression and fatigue. Despite the strong anti-nausea drugs, chemo also makes you feel achy and flu-like, so everything--well--HURTS. There was no way around it: I was a big, woe-is-me, baby all day. I got to the PET scan place at 4:00 and, once again, had no veins to work with. My guy finally found one and was able to do the 60 minute scan without incident. I went home and ate Chinese food. I think I may also have eaten small children on the way home from the hospital.
One thing I learned very quickly was that chemo is toxic, chemo is poisonous, and chemo is strong. My treatment team urged me time and again to drink as much water during and after chemo as possible in order to flush it out of my system ASAP. Unfortunately, my first post-chemo day was spent fasting for an evening PET scan. For the last time I insist: They should NOT do fasting tests in the afternoon! However, that was the only time available on such short notice. The PET scan is also important because it's essentially a full-body image that shows if/where the cancer has spread. So, while I comprehend the logistics and immediacy behind it, it did not make STEWING IN CHEMO POISON the next day any easier. I couldn't move. I tried to take a regular shower but ended up sitting on the shower floor instead. After toweling off I took a nap. After dressing I took a nap. I'm not talking about a "wow, what a week....I could use a rest" type of fatigue, but a bone-weary lethargy. Nothing could prepare me for that type of depression and fatigue. Despite the strong anti-nausea drugs, chemo also makes you feel achy and flu-like, so everything--well--HURTS. There was no way around it: I was a big, woe-is-me, baby all day. I got to the PET scan place at 4:00 and, once again, had no veins to work with. My guy finally found one and was able to do the 60 minute scan without incident. I went home and ate Chinese food. I think I may also have eaten small children on the way home from the hospital.
Friday, September 19th:
Mom and I drove to Rockport for a change of pace and allow her to temporarily return to her life. Later that afternoon as I was deep in sleep, Mom’s friend Sandel came over to commiserate. Sandel as had cancer for years and has been terminal for quite awhile. She is active, working, and social, but still and understandably revolves her life around the Big C. I knew that we had scheduled a second meeting (I had met her before), but was still shocked awake when my mom vigorously nudged me awake saying, “Sandel’s here!” I finally jumped up and made myself presentable. Sandel told me about her diagnosis and grim prognosis despite looking fantastic, and helped coach me about how to respond to stupid comments people make, what to expect when I lose my hair, and how to manage the inevitable, undeniable fatigue.
Mom and I drove to Rockport for a change of pace and allow her to temporarily return to her life. Later that afternoon as I was deep in sleep, Mom’s friend Sandel came over to commiserate. Sandel as had cancer for years and has been terminal for quite awhile. She is active, working, and social, but still and understandably revolves her life around the Big C. I knew that we had scheduled a second meeting (I had met her before), but was still shocked awake when my mom vigorously nudged me awake saying, “Sandel’s here!” I finally jumped up and made myself presentable. Sandel told me about her diagnosis and grim prognosis despite looking fantastic, and helped coach me about how to respond to stupid comments people make, what to expect when I lose my hair, and how to manage the inevitable, undeniable fatigue.
On Saturday ay I met with the "famous wig lady" and purchased a sassy reddish-brown shag. The manufacturer calls that particular wig "Ginger Brown." Sounds kinda like a stripper name. My doctor said that my hair should fall out a few days after my next chemo. I was taking it in stride but absolutely knew that it's about to get really f-ing hard. I'm a girly-girl. I like my hair. I own lots of shampoos, conditioners, pomades, gels, sprays, and serums. I wear headbands and clips more often than not. In addition to purchasing a wig, I dug through my mom's scarf stash and borrowed some elegant silk numbers for those days when I just want to hang up my hair (literally). THAT is when it started to get real. REALLY real....
Tomorrow I find out the results of my PET scan and have more labs drawn. I just discovered that I'll have my blood drawn every other week for the next 6 months, then about once every few for the following 6 years. The purpose is to find out if I'm healthy enough for each following chemo (white cells, red cells, hematocrit, hemoglobin, platelets, etc). While my regimen--called ABVD--is hard core at killing cancer cells, it also kills healthy cells and can lead to other issues if not addressed immediately.
I'll report my test results tomorrow but, in all honesty, I'm not sweating it ;)
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