First Chemo
Well, I have lost my Chemo-Virginity as my friend Kristina called it. Though this jumps ahead of the story, creating coherent thoughts is really hard right now. I am having trouble organizing letters into words, and words into thoughts. My brain seems totally disconnected from my body. I feel dizzy and can't interpret the signals my body is sending to my brain. So, please keep this in mind as you read this evening's posting.
Since I haven't really processed the day in my now non-functioning brain, I expect this entry to be a log of activities, not emotional responses. But, since I can't think 3 minutes ahead, let's see!
Leslie and I got out of bed very early. First Leslie showered and then I followed. By the time I emerged, Leslie had homemade oatmeal and coffee waiting for me. I was able to eat about 5 bites. Not bad all things considered. We headed to the hospital at 8:30, arriving around 9:15. After check in, I was called to give blood [this will happen each visit.] Blood will always be drawn via finger prick to avoid using the veins in my left arm. Next stop is vitals. My blood pressure was out the roof! I had managed to gain 3 pounds in the past 24 hours, probably due to all the water I have been consuming.
Back to the waiting room to wait for Nurse Jenn. Today the waiting room was hopping. Lots of 9:30 appointments, I guess. There is very little interaction between patients, who mostly have family/friends with them. Once Jenn called me back, we went straight to her office. I had to strip and do a johnny, always my favorite. A fairly comprehensive inspection followed, finishing with my strange two-year old rash. Shingles! Can you believe this? Shingles? No wonder it hurt/itched so darn much.
Jenn asked if I had started the medications yet. No I hadn't. "Don't," she said. "I need to get Dr. Roger. Get his assessment. We may want to delay you." Dr. Roger quickly came in and checked it all out. He concurred that this was probably shingles, but was healed enough. They checked my height and we were off.
The infusion room actually has 21 chairs and 6 private rooms with beds. Chair 17 was occupied, so we were placed in Chair 12. More forms to fill out, volunteers handing out lunch order forms, a fair amount of activity. The nurse assistant hovered for a few minutes, before Nurse Judy arrived. This is one thing about this hospital that I like alot: I will have Nurse Judy for all of my infusions and neulasta shots.
Nurse Judy asked what side she could use. Of course everything was set up on the right side, while I need her to use the left. She cheerily said "That is why everying is on wheels!" She moved the apparatus and raised the desk on the left side. First up, laying down a sterile quilted paper pad, add Susan's Arm, tourniquet, hot packs above and below my hand, then wrap the arm letting the heat expand the veins. They prefer that hand as an entry point, and will then work their way up the arm as needed.
Nurse Judy got my vein with basically no pain. She is good at this! They started with a saline drip, then they started adding the other stuff like decadron, avitan and other things which Leslie has written down in his notes. Nurse Judy returned with Nurse Padd for the final review. Due to the toxicity of these drugs, they both proofed that I am me, that I understand the procedure, and that the drugs were a logical amount for my weight and size. There are numerous checks and balances for administering these drugs.
The first drug, adriamycin, is bright red and is pushed. Nurse Judy needs to sit there and push the drug into a split in the IV line. I mentioned that there was a lot of pressure in my arm. She immediately slowed down the push to make me more comfortable. When that was done, she put the cytoxin onto the IV tower and the next drug started. Again, we needed to slow the drip just a bit.
As the bag emptied, lunch arrived but we put them in the kitchen for another patient. It was time to go. On our way out, we stopped by the Oncology Store to see if they could help with hair in 30-minutes. Yes, indeed they could! So we headed outside so I could have a cigarette [yea yea yea... this was stressful!.]
At this point I suddenly realized that I was high, stoned, totally happy. How odd!
Leslie accompanied me back to the shop on the 9th floor, and left to find a real sandwich. The shop was totally relaxed, and we have fun trying on wigs. Started long, and slowly got shorter. Found a color we liked, and then a style that seemed good. The price was totally cool, much lower than my maximum. It is cut about the shoulder, with bangs. Rather bob-like. Leslie says that it is like someone's hair in the movie Alien. It should come in a week from Friday. In plenty of time.
And we headed home, stopping at the Whole Foods. I have been told to gaze, that my stomach should never be empty. So I strolled the aisles buying anything that looked appealing while keeping in mind easy preparation. I need to have some easy to fix food in the house that isn't just carbs.
Once home, a few important phone calls, and then I crawled into bed. for a much-needed two-hour nap. Since waking up, I have felt a low level of nausea, the starts of a cytonxin headache, and generally uncomfortable. I don't know how to translate the signals my body is sending to my body. It is all very new to me.
That having been said, it isn't horrible. Well, it has taken me almost 2 hours to write this blog, so it is slow. Just a new world here. Here is what my office shelf looks like now. And I have a schedule for dispensing!
Since I haven't really processed the day in my now non-functioning brain, I expect this entry to be a log of activities, not emotional responses. But, since I can't think 3 minutes ahead, let's see!
Leslie and I got out of bed very early. First Leslie showered and then I followed. By the time I emerged, Leslie had homemade oatmeal and coffee waiting for me. I was able to eat about 5 bites. Not bad all things considered. We headed to the hospital at 8:30, arriving around 9:15. After check in, I was called to give blood [this will happen each visit.] Blood will always be drawn via finger prick to avoid using the veins in my left arm. Next stop is vitals. My blood pressure was out the roof! I had managed to gain 3 pounds in the past 24 hours, probably due to all the water I have been consuming.
Back to the waiting room to wait for Nurse Jenn. Today the waiting room was hopping. Lots of 9:30 appointments, I guess. There is very little interaction between patients, who mostly have family/friends with them. Once Jenn called me back, we went straight to her office. I had to strip and do a johnny, always my favorite. A fairly comprehensive inspection followed, finishing with my strange two-year old rash. Shingles! Can you believe this? Shingles? No wonder it hurt/itched so darn much.
Jenn asked if I had started the medications yet. No I hadn't. "Don't," she said. "I need to get Dr. Roger. Get his assessment. We may want to delay you." Dr. Roger quickly came in and checked it all out. He concurred that this was probably shingles, but was healed enough. They checked my height and we were off.
The infusion room actually has 21 chairs and 6 private rooms with beds. Chair 17 was occupied, so we were placed in Chair 12. More forms to fill out, volunteers handing out lunch order forms, a fair amount of activity. The nurse assistant hovered for a few minutes, before Nurse Judy arrived. This is one thing about this hospital that I like alot: I will have Nurse Judy for all of my infusions and neulasta shots.
Nurse Judy asked what side she could use. Of course everything was set up on the right side, while I need her to use the left. She cheerily said "That is why everying is on wheels!" She moved the apparatus and raised the desk on the left side. First up, laying down a sterile quilted paper pad, add Susan's Arm, tourniquet, hot packs above and below my hand, then wrap the arm letting the heat expand the veins. They prefer that hand as an entry point, and will then work their way up the arm as needed.
Nurse Judy got my vein with basically no pain. She is good at this! They started with a saline drip, then they started adding the other stuff like decadron, avitan and other things which Leslie has written down in his notes. Nurse Judy returned with Nurse Padd for the final review. Due to the toxicity of these drugs, they both proofed that I am me, that I understand the procedure, and that the drugs were a logical amount for my weight and size. There are numerous checks and balances for administering these drugs.
The first drug, adriamycin, is bright red and is pushed. Nurse Judy needs to sit there and push the drug into a split in the IV line. I mentioned that there was a lot of pressure in my arm. She immediately slowed down the push to make me more comfortable. When that was done, she put the cytoxin onto the IV tower and the next drug started. Again, we needed to slow the drip just a bit.
As the bag emptied, lunch arrived but we put them in the kitchen for another patient. It was time to go. On our way out, we stopped by the Oncology Store to see if they could help with hair in 30-minutes. Yes, indeed they could! So we headed outside so I could have a cigarette [yea yea yea... this was stressful!.]
At this point I suddenly realized that I was high, stoned, totally happy. How odd!
Leslie accompanied me back to the shop on the 9th floor, and left to find a real sandwich. The shop was totally relaxed, and we have fun trying on wigs. Started long, and slowly got shorter. Found a color we liked, and then a style that seemed good. The price was totally cool, much lower than my maximum. It is cut about the shoulder, with bangs. Rather bob-like. Leslie says that it is like someone's hair in the movie Alien. It should come in a week from Friday. In plenty of time.
And we headed home, stopping at the Whole Foods. I have been told to gaze, that my stomach should never be empty. So I strolled the aisles buying anything that looked appealing while keeping in mind easy preparation. I need to have some easy to fix food in the house that isn't just carbs.
Once home, a few important phone calls, and then I crawled into bed. for a much-needed two-hour nap. Since waking up, I have felt a low level of nausea, the starts of a cytonxin headache, and generally uncomfortable. I don't know how to translate the signals my body is sending to my body. It is all very new to me.
That having been said, it isn't horrible. Well, it has taken me almost 2 hours to write this blog, so it is slow. Just a new world here. Here is what my office shelf looks like now. And I have a schedule for dispensing!
As I said, a new world. But I have hair!
I think all I have has been given. Again, emails and phone calls are welcome. If I am not up to responding, I will rely on your patience. Thanks for all outpouring of support today.
p.s. Simply can't proof tonight. Sorry.
posted by *susan* at
9:48 PM
3 Comments:
Oh I'm so glad to see you posting! I have had you in my thoughts - i was laying in bed and couldn't sleep for fear that things had turned for you. I will rest now, knowing that you are generally well, even if you're loopy. :-)
I feel blah, not sick, but blah. I'm hoping to sleep it off...
Love,
K
By
Kristina, at 11:47 PM
Hello - I have been watching your blog off and on for a few weeks. I hope you are doing well. You are a strong person and are in my thoughts and prayers.
By
Susanne Hughes, at 1:23 PM
Thank you, thank you, thank you! for the detailed account. You are clearly among people who Get It and pay attention.
The story about ordering a wig cracks me up. All the hassle over the wig store and then you wander in, have a good time trying them on and it's affordable and here by Friday. Way cool!
Love and hair,
gr
By
Anonymous, at 2:20 PM
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