2 is less than 12

My second chemo treatment was scheduled for this afternoon. Shane was scheduled to be in St. Louis in preparation for a wedding this weekend. With only one car, we had some thinking to do on how to get him to a different time zone and me 80 blocks north to the cancer center at the same time. We finally decided that he would fly to St. Louis so I could have the car, and then I would drive on Saturday to join him for the wedding.

With the absence of Shane (my husband, my driver, my entertainment, etc...), I prepared to tackle this treatment independently. I rehearsed the driving directions in my head, packed a book, and charged my iPad. All week, I had been mentally practicing sitting still by myself for three hours. Without Shane there to monitor my behavior, I had to take extra care to put on my "normal" act as I prepared to venture out in public alone. After four hours of work this morning, I quickly changed out of my uniform and scarfed down some lunch. The time had arrived. I made it to the cancer center without getting lost and walked in, bag of time passers over my shoulder, ready for treatment.

The first step was my blood draw. I then waited for it to be analyzed so I could meet with the doctor. As the doctor walked in, his first question was, "What did you do with Mr. Dale Carnegie?" First of all, his name is Shane. Second, I didn't do anything with him. After asking about my experience after the first treatment and checking for all possible side effects, he felt my neck (the origination of the cancer). Up until this point, I have not been feeling/sizing up the lumps in my neck, figuring I will just let the chemo do its work and not be preoccupied with whether or not the tumors are shrinking. He mentioned though that the biggest one felt considerably smaller, and after feeling it myself and looking at it in the mirror I can tell that he is right, it is shrinking!

Next he pulled up my lab work on the computer. He had me read the chart as if I was some sort of med student. The first line of the chart was my white blood cell count. Two weeks ago before any treatment it was 12. This week it was 1.9, too low to give chemo. Chemo targets rapidly growing cells such as cancer, hair, and white blood cells. If the white blood cell count gets too low, chemo cannot be given because it will drop the count even lower, putting the person at a high risk of infection. Being the scheduler, planner, and OCD-er that I am, this throws a wrench my very well planned treatment schedule. I have to go back next week to try again, and I also have to add another step to the treatment regimen. The day after my treatments, I have to go back and have a shot that will boost my white blood cell count.

The good news with this delay is that I will be more than feeling okay to drive the five hours to St. Louis for the wedding. Watch out St. Louis, I'm bringing my dancin' shoes 'cause my tumors are shrinkin'!

WOW! I feel good...

"I knew that I would, now I feel good, so good, so good..."

This James Brown song has been my theme song this week. Everywhere I go, every entrance I make, I am imagining this song playing. Unfortunately, only I hear the music and as I dance around like a crazy, I get some weird looks.

One of the biggest unknowns going into chemo was how my body was going to react. Now that a week has passed, I am able to compare days and gauge the reaction. Immediately following the chemo last Friday, I was pretty nauseous. They supposedly pre-treated me with me anti-nausea medicine before they gave me the chemo drugs, but my nausea was too intense to be anti-ed because as I walked to the parking lot, a wave of nausea swept over me. We quickly went to the pharmacy to get the prescription filled for the powerful anti-nausea medicine, Zofran. Zofran is the real deal. One tiny pill of that and I was good to go.

Saturday and Sunday I felt pretty normal. I was a tiny bit tired, but I think part of that was the 10 hour days I worked that week. Monday was probably the "worst" day. And I use "worst" very loosely, because it wasn't that bad. I felt tired and worn out, but that I could handle. It was the mouth sores that made me want to spit every 5 seconds. Monday morning I woke up with what seemed like lots of little cuts inside my mouth. It felt like I had chewed on shards of glass overnight. The sores left my mouth with an acidic/bloody taste. All I desired to do was to keep spitting to get that taste out of my mouth. Sadly, we don't keep spittoons around the gym and it wouldn't have exactly been professional for me to carry a trash can around all day.

Tuesday the sores were on the mend, and I started to feel like I was getting my energy back. Wednesday came and I was back to my normal self, only much hungrier. The doctor claimed that the steroid they gave me on Friday would wear off within 48 hours. I think for me, it was just kicking in. I wanted to eat everything in site. Everything (and I mean everything) sounded absolutely delicious to me. Even the fried chicken that had been sitting under the heat lamp for 16 hours at the grocery store seemed like a good idea. Luckily something (thank you, Shane) brought me to my senses as I had the chicken in hand heading towards the check-out line, and I returned it to its heat lamp home for some other steroid-crazed person to chow down on.

Since Wednesday I have felt absolutely great. It was a sweet relief to be completely appointment free this past week which hasn't happened since April. Now the weekend is here and I am going to kick it James Brown style, feelin' good.

Braver than You Believe

Yesterday was my first chemo treatment and it is a relief to have the first one over with and know what to expect from here on out. Fridays are a slow day around the Cancer Center, not many patients and a limited number of staff. After waiting what I thought was too long for being one of two people in the waiting the room, I was called back for my first port draw. As walked through the door to the treatment room for the first time, the sight of all the other patients receiving chemo struck me. About 10 chairs are separated by half walls, and they each face out into the room. Walking in to the sight of people connected to their chemicals, all much older than me and very sick looking, I did not feel like I belonged there. The nurse took my lab sheet and told me to pick an open chair. As I sat down, the fear of the unknown began to creep up on me. The nurse came over and immediately recognized that it was my first time because I still had hair and my eyes were probably as big as saucers. Very kindly she explained how everything was going to go. She then went to obtain the necessary materials and left me to my own thoughts. As I looked around, the whole experience began to overwhelm me. As the tears started to well up, I told myself I can do this and remembered the quote that sits on my bathroom counter.

"Promise me you'll always remember...You're stronger than you seem, braver than you believe, and smarter than you think." Christopher Robin to Pooh

The nurse returned with the first of many syringes to access my port. She instructed me to take a deep breath and on the count of three she was going to stick a needle into my port. Unsure of what pain level to expect, I asked if it would feel like a normal IV stick or worse. She said it may be a little bit more painful, but since I had applied the numbing cream it might not be bad at all. As I drew in a deep breath and she got to three, all I felt was a slight push on my chest, no needle prick at all and I said, "Wow, that was easy!" She must have read my mind earlier because she replied, "The fear of the unknown is the worst." After she was done with my blood draw she showed me where I would be taking the sample each time and instructed me to have a seat in the waiting room for my appointment with the nurse practitioner. Again, after what seemed like much too long of a wait (I guess I haven't exactly mastered the whole patience thing yet), I was called back. The nurse explained the drugs I was going to be receiving and the potential side effects. After a very thorough explanation in a heavy accent from who knows where, she gave me the information packets, some prescriptions and led me back to the treatment room.

As I took a seat and the nurse came back over, I withdrew the IV tubing from my bra (what a magic trick that was) and she got me hooked back up. The first thing I received was a small bag of a steroid which helped with nausea. In about 15 minutes when it ran dry, the nurse came over and did a push IV of another anti-nausea medicine. With a push IV, instead of letting it hang and drip through the tubing, she accesses the tubing with a syringe and injects it slowly. With the first two preventive drugs done, it was time for the actual chemo. The first three chemo drugs were pushed while the fourth was mixed with the saline. The first drug was the most interesting of all and was a very deep red. That is the one that made me pee orange (imagine the joy when I peed my favorite color!).

When the bag of the final drug was dry an hour later, the nurse returned to prepare for my exit. She brought over more syringes (I think I will take out stock in syringes considering she used 10 just for me) to clean my port and inject a medicine to prevent clotting, which brought my medicines received in one sitting count up to seven. After that was complete, she said, "There you go, you just completed your first chemo treatment." And I thought to myself, "That wasn't bad at all. I can do this, I really can do this."

I returned home to find all kinds of love and support reminding me that I am not alone in this adventure. I had beautiful flowers waiting for me, along with a book, and a card. Also, as I left work that day my coworkers presented me with a very generous gift card to use towards an iPad to help pass the time during chemo. It is a blessing to have so many people fighting for me.

First Day on the Job

Wednesday I had a MUGA test to determine a baseline for my cardiovascular function. Everything went very smoothly minus the small detail that I am pretty sure it was the lady's first day in nuclear imaging. As she called me back she explained every tiny detail of what was going to happen. Usually I appreciate knowing what is coming. I do not, however, need to know what exact chemistry is happening with my blood cells. That was my first clue Linda was new to this - she still remembered all of that. My second clue came as she was putting an IV in and as I felt a little more pain than normal I heard the words, "Oh! There we go! I had the wrong angle." Next time you should keep those thoughts in your head, Linda.

After waiting a very short 15 minutes for the first injection to circulate, she injected me again, this time with a little more ease. She then strapped me to the narrowest of beds and began positioning the device that would image my heart. As she began toggling the remote and the device started to move towards my feet I had my third clue that this lady was not only new to the job but she also didn't know her basic directions - up, down, left, right. Finally with the device in place, the test began. It was a very bearable 10 minutes. Half way into the test Linda came close to my head, patted my shoulder and in a voice that one might talk to a 3 year old said, "I'm going to go right down the hall. I'll be right back, honey." Thanks for the update Linda. I was worried.

Overall, it was a smooth appointment, despite it practically being Linda's first day on the job. I was appointment free today which is good because I am gearing up for the biggest appointment yet. Tomorrow I start chemo and will be at the Cancer Center for about four hours, three of which I will be hooked up to an IV not allowing me to go anywhere but the chair in which I will be sitting. Here we go - it's go time.

Tickets to the Gun Show

This week has started off nice and easy in contrast to last week. I was appointment free on Monday and this morning I had a very short appointment with my family physician.

When I called to set this appointment up, the receptionist, with less than acceptable customer service skills, asked why I needed the appointment. Being the anatomy freak that I am, I figured the more specific the better and told her I had lumps in my "inguinal" region. However, I learned I was much too quick to reveal my knowledge of the human body when the receptionist replied, "I don't know where that is." Bummer, I'm going to have to use layman's terms. "It is by your pelvis," I kindly educated her. With growing annoyance in her voice she said, "I am not medical. I don't know what that is!" Are you kidding me? You work in a doctors' office and don't know where your pelvis is? I gave up and told her quite abrasively that it is your CROTCH! "Oh, your groin area," she said as if it all suddenly made sense and set my appointment.

Going into the appointment I was not necessarily excited about the prospect of yet another doctor appointment, but I wasn't wishing I was somewhere else either. You see, I set this appointment myself, and if there is one thing I like, it is to be in control. I was also kind of looking forward to seeing her (my physician) again because I hadn't seen her since the beginning of May when we met the first time and she got this whole ball rollin'. I thought I should say thanks for caring enough to make me get tests done to figure all of this out. Also, she is really nice, and I was willing to pay a $25 co-pay just to see her again.

When I arrived at the clinic, I felt such relief to not be in the Cancer Center for once. The family practice clinic seemed much more inviting and much less heart breaking. After a short wait, a male nurse named Raul called me back to the exam room to get my vitals. As I took a seat in the chair, he gave me a once over and declared, "Oh, that is why you have that body." Excuse me? Looking at my work uniform and name tag he said, "You are a trainer. I was thinking to myself, 'She is very fit.'" I awkwardly laughed and tried to put my ring hand where he could see it as he continued to comment. "Has anyone ever asked you if you have a license for those guns?" Half-flattered and half-about to gag, I said, "No, they haven't actually." On his way out the door he said, "Well, they have now."

Thank you, Raul for noticing my biceps. It's about time someone did.

You'll be transported by cart

Even though this week has been short in the sense that we were coming off of a three day weekend, it was the longest week yet in terms of appointments, tests, and preparing for the upcoming chemo treatments.

Tuesday put my patience to the test as I had a PET/CT scan to determine what stage of lymphoma I have (only stage 2!). After doing some research about PET scans to assure my father that they in fact DID NOT take my dog, Jenny and hover scan her over my body, I was expecting about an hour long appointment. Man, was I surprised when Ted let me back to a room measuring 6'x4' in size, containing one chair and informed me I would have to wait an hour and half by myself for the injection of radioactive sugar to circulate. Um, excuse me, Ted? Obviously you do not know me and my childlike tendencies including the fact that it is very difficult for me to sit ALONE for any period of time, much less an hour and half. But Ted insisted that I sit there and only get up if I have to pee. So I sat. When Ted came back after 90 minutes, I was so relieved to be done waiting. My relief was soon squashed though as we entered the scanning area and he informed me the scan itself would take another 30 minutes. Thirty minutes sounded doable until he started strapping me to the tiny bed! With a strap holding my head in place and a strap immobilizing my arms, I felt as if I were being prepared for the asylum rather than a scan. After a total time of two and half hours including registration, preparation, and scanning, we finally left and I went back to work slightly radioactive.

Wednesday was not too noteworthy other than the fact that I went in for surgery to have a port placed. Ugh. This was the most dreaded appointment thus far. Number one, I was not looking forward to surgery again. Number two, the idea of having a port kind of gives me the heebie jeebies. The surgery went well, no dropped lungs or excessive bleeding, just a bump on my chest where I have a foreign object in my body.

Thursday I met with my oncologist to discuss the results of the PET/CT scan and determine a firm plan of action. I was relieved to hear that the cancer is only in stage 2 and I will only have to undergo 8 chemotherapy treatments over the course of 16 weeks. After I am done with chemo cycles, I will have radiation daily for an unknown amount of time.

Friday started off in the most hilarious way. In order to prepare for chemo and the unlikely, but possible, side effects, baseline testing must be done on my pulmonary and cardiovascular function. After registering for my pulmonary function test, kind Holly informed me that Cindy would be meeting me just around the corner to take me to the testing place. "You'll be transported by cart," were the exact words that came out of her mouth next. What does that mean? What type of cart? Are we talking shopping cart? Ambulance cart? Where are we going? Across campus? Outside? But time did not allow me to ask any of these questions as Cindy pulled up in a golf cart and said "Hop on!" Poor Shane barely managed to make it on before Cindy opened that baby up and we were off. Zooming down the halls of the hospital, acquiring many skeptical glances as to the reason a very able looking 23 year old is riding in a golf cart, I informed Cindy that this all seemed a bit excessive. She said, "Yeah, but I don't have very good walking shoes on and it is kind of a long walk. And most people I am taking to the pulmonary lab have trouble breathing and to get a good test they shouldn't be walking and getting all out of breath." Well, there you have it, the reason I, a 23 year old Health Fitness Specialist, rode in a golf cart down the halls of the hospital.

After lots of different breathing tests, the lady told me that my next test was across the street at the cancer center (even though the day before I specifically asked where the cardio test would be and was informed it would be in the same place as the pulmonary test). When I arrived at registration and told the ladies I was there for a MUGA test, they looked at me like I was slightly crazy. They told me that the MUGA machine is out of order and has been for a while. They were surprised that no one called me. Off they went to investigate. They brought over a third lady that claimed she tried calling me the day before to let me know. According to her, my cell phone didn't have a voicemail (whose cell phone doesn't have a voicemail?). So she left a message at work for me. Oh really? I never received a message. "Did you get to my voicemail? Did it say my name?" I asked her. She looked at me quizzically and said, "No, it said Bubba's BBQ." With my work uniform on, I hold out my name tag and show her that I do not work at Bubba's BBQ. Do I look like I work at Bubba's BBQ? After double checking that the number they have on file for work is correct, the crazy lady admits to possibly dialing the wrong number.

Normal Lori would have been frustrated at the fact that they didn't tell me the right place to go for my test and irate that I wasn't informed of the out of order machine and drove all the way up there for nothing. But I had already enjoyed a hilarious transport in a golf cart that morning and am starting to learn great patience with the whole medical system through this process.