DOUBLE DIGITS!!! That's right, 10 down and 6 to go! Wednesday evening seems like a whirlwind, there was so much going on. I had been guzzling water all day to hydrate my veins in hopes they would behave for the chemo nurses. But that also meant that I was stopping by every bathroom we passed. I signed in for labs then went to the bathroom. Occupied. Had my blood drawn and then headed back to the bathroom. Occupied. But the men's wasn't! When I exited the men's restroom two older woman stood shocked outside the door. "It's clean and no line!" They laughed but I'm pretty sure they still waited for the woman's.
Krissy and I headed to the doc's waiting room and waited some more. We munched on trail mix while Krissy dissected the drama I create in my life by dating too many boys. Apparently it's time for me to grow up? Nope, saved by the bladder - time to go to the bathroom again! Knock on the door - occupied. Wait for a minute... and the emergency help light goes off. Can't a girl just pee?? I walk back through the waiting room, tell Krissy of my bladder drama and leave the doc area to find another bathroom. I come back moments later to discover my name was called. Krissy and I venture back and find the tech who takes my vitals (btw, lost 4 pounds last week... oops. Looks like not eating from all the nausea last week was a secret diet?). Then she says she doesn't have a room ready yet. I have yet to figure out what it means to have a room "ready". I am the last appointment of the day. There are not many patients left and all of the docs, nurses, and receptionists are doing paper work at this point. It's not like the room needs to be cleaned or anything. Just the paper on the table is replaced and the gown taken out of the drawer (which I immediately replace in the drawer. I made the executive decision years ago I don't need a gown). So the tech offers us to wait in a 4 chair waiting area in between the doc offices and waiting room. Now mind you the waiting room is 5 feet behind us. It's not out of the way to go back to a room with reading material, tvs, and of course more water for me to drink. We think we'll only be sitting here for a minute or two. Well after 20-30 minutes have passed Krissy and I are completely slap happy after analyzing every detail in the only entertainment we can find in our teeny-tiny waiting area - a quilt.
We are finally saved and head back to see my doc. We've reached the point that I look great on paper, I feel great in person, so there's not a whole lot to talk about.... well, regarding my health that is. I was really ill last week with nausea, it took over my whole life for about 10 days. But I just overdid it with school, going out, and was fighting off an ailment from the kiddos. So add it all together and my body didn't like me for a bit. But other than that I've been great. So she starts off by giving me a hard time for not getting the port! "Why didn't you go through with it?! All they had to do is reopen the scar from your old port and you're good to go!" I gave her a guilty look, "Welllllll, I decided the pain isn't that bad. And I just don't want it." "You don't want it sticking out! You don't want it interfering with your dating life! I was really wondering what happened and why you decided no - I should have known!" So we chatted a bit about my neuropathy and then a lot about my current dating life. The challenges of dating with cancer - I could seriously write a book now.
Then the worst part of the whole visit occurred... I learned it was my fellow's last week (I'm pretty sure I started referring to her in the beginning of this blog as my fellow and then somehow transitioned into resident. Well, she's a fellow. And a damn good one at that). My doc called her in for me and she and I just hugged and fought back tears. I've been through many fellows at Barnes and she has by far been the best. I'm going to miss her so much, thank GOODNESS I'm already in remission and it happened with her. Although my doctor is seriously the best, having to meet a new fellow can be stressful. I was so comfortable with her, I had no shame discussing every little personal detail about my side effects. But life goes on and I couldn't be happier for her. Krissy and I headed over to treatment, now sad but the silliness seemed to be increasing.
When my chemo tech came out for me in the waiting room I shout, "Time for happy hour!" She starts laughing hysterically then comes to the conclusion that I must have been at happy hour due to my behavior. Truth be told, I'm exhausted and have entered slap happy mode. I had been up since 3am with nausea. It was HORRIBLE. By 5:30am my meds had brought me back to normal, but I had yet to go back to sleep. So I hit up yoga and went on with my day. Here I am 15 hours into my day and laughing like a little school girl. I'm tired, so sad, and dreading the hunt for my veins. So what do I do? Laugh. As we wrapped up my arms with heat (it helps the veins) my chemo nurse decided not to even mess with it and immediately went for the charge nurse. And she got it in the FIRST try!!!! My sister brought Dawson's Creek as my treatment surprise, but we had too much fun chatting with my tech, the nurses, other patients, celebrating the girl across from me who was having her last treatment, eating pudding, laughing at the nurses modeling the new hats... too many laughs were to be had and only 2 minutes of Dawson's were actually watched. When the girl across from me left, Krissy and my tech started laughing at the fact that it seems like the last few times I've been there it's always someone's last treatment day! The girl who was celebrating her last day was giving me support for just starting treatment. Like I've said, you can't tell by looking at me that I've been on treatment for 15 months now. Even other cancer patients can't tell! I told her this was my 10 cycle of this drug and I'm not expected to lose my hair. She was on her final cycle - cycle 4. UG! And the cocktail she was on was ABVD - what I did 8 years ago (except I did 16 cycles). Well, no need to compare, I am beyond happy for the girl, especially since she could not believe the fact that I'm only months away from 30 :). My tech comforted my complaints that I still had 4 months to go and put my final chemo date in her phone so we can go out and enjoy a REAL happy hour :).
The pain wasn't too bad this time. She ran it at the normal 30 minutes which honestly in the end could have been slowed down, but I pushed through the pain. When cold fluid runs through your vein that fast it makes your arm cold. Very, very cold. To the point I can't feel my arm because it's going numb. And numb = pain. When my chemo nurse was removing my iv she was even a bit surprised at how cold my arm was; and that was through her gloves!
Probably the best part about the whole trip (besides the chemo nurses being slap happy like me and parading around the pod with the gosh-awful hats) was the fact that I felt FINE when leaving! Now, Krissy argued that her arm would disagree with this fact. Apparently I was still holding on tight as we walked out. Sure I was still a bit weak in the knees, but I didn't feel that bad! I sang on the way home and survived the drive-through for dinner which usually makes me want to cry from being stressed out with way too many options. When we arrived home I was fine. I was functional, not sick, just slightly sleepy. The next day was the same story!! It was an easy hangover! The body aches increased more this time than normal and standing was not desirable, but I wasn't sick! The only thing that sucks is that it's lasting a long time. Here it is Saturday and I am sooo sleepy still! Just getting ice cream with Sheila, Maaria and the fam was enough of a Friday night adventure for me. I was in bed by 9 :(. I had plans to be at the lake with JRob this weekend and seriously thought I could do it. Why do I kid myself sometimes just to set myself up for disappointment?! Oh well, a weekend of R&R really isn't the worst of ideas I guess. This hangover too shall pass and I will once again be back to normal before I know it!
Saturday, June 23
Wednesday, June 20
The Secret Life of a Cancer Patient
If you're an FB friend then I guess it's no secret. But from day to day I've become very good at separating my different lives, keeping them from overlapping. At school I'm a teacher. That's it. The only thing about my illness that gets in the way is taking so much time off. But I'm able to maintain a safe and fun learning environment for my kiddos without my illness being a factor during any part of the day. Well, I do struggle with opening jars and string cheese packaging because of my numb fingers, but that's manageable! But when it's quitting time happy hour is calling my name and I find a patio filled with friends and fun. Thing is, most of those friends though don't know about my other life, the cancer patient. So many secrets!!
I don't broadcast the fact that I have cancer or suck it up every 3 weeks for treatment. People change as soon as they find out. I'm treated differently. It's not necessarily bad, but it's a label. Don't get me wrong, I am VERY proud of the fact that I've beaten cancer... TWICE :). But a quick "awesome news" or "how ya feeling today" can quickly turn into a serious convo. Again, things that I do not mind and honestly do enjoy talking about, but it's also SO NICE to walk in the door at night and realize I did not have one cancer-filled convo during the day. Cancer has taking over my body and life in so many ways so I try my hardest not to let it take over all of my conversations.
Now I also know I'm contradicting myself here.... I've made it very clear that I would not be this strong if it wasn't for the support of everyone in my life. I think I made it pretty clear in I Just Kicked Cancer's Ass how much I appreciate everyone's support. Hmmm, so how do I keep my support group but also have fun living life pretending I don't have cancer? Live a secret life!
So in my secret life I have become good at separating my groups of friends. Those who know I'm sick and those who don't. And then there's that group of bff's who know all and I intermix :). I've said it a million times and will say it a million times more - I am so incredibly blessed in life to have so many close friends. Aunt Ronna once told me that you don't just "have" friends. You earn them. And I feel proud to look at my group of girlfriends who have all been true friends before the whole cancer thing even came along.
Again, my secret life isn't so secret... especially with FB and JRob's obsession with check-ins :) But I like to pretend it is. Most cancer patients learn to live calm and simple lives. But what do you do when you're a single 20-something with more energy than most chemo patients? Hop around town making endless memories... because you never know which one could be the last.
My sister bites her lip with her sarcastic comments when I'm going through 20 questions with my doc. On my last scans there was one lymph node that showed a bit of activity, but it was so tiny and in my abdomen that they did not think it was the cancer; probably just some sort of infection. "Have you had an infection or anything lately?" "Nope, I've been great. The kiddos had an awful fever thing during the last week of school but I never caught it. My body is probably just fighting that off?" The whole time Krissy is smirking but holding back, "Possibly could it be from the 5am swim in the freezing cold pool? The pool that was not 100% treated yet? Or only getting 2 hours of sleep in between your Friday night festivities and bloody-mary breakfast on Saturday? OH, and then followed by more time in the not-quite-ready pool?" My docs know I like to party; they will joke about me having more than just one beer or that staying out on the dance floor could be what is depleting my energy, not just the chemo! So I know that I don't always make the healthiest of decisions... but don't worry, I do listen to my body when it tells me to slow down.
Maybe my secret life isn't all that secret, but I like to pretend it is. When I'm out and about meeting new people, they want to get to know me for me - not because of my story. But if it comes up, it comes up. Last summer I had the most raspy voice that I blamed on "allergies" when in reality it was from a tumor in my lung. This summer I have zero obvious side effects from the chemo making the truth much easier to hide. No, it doesn't always make sense to hide something that I am most proud of in life. But every now and then it feels good to escape the reality of needles, nausea, and bills and let loose.
I don't broadcast the fact that I have cancer or suck it up every 3 weeks for treatment. People change as soon as they find out. I'm treated differently. It's not necessarily bad, but it's a label. Don't get me wrong, I am VERY proud of the fact that I've beaten cancer... TWICE :). But a quick "awesome news" or "how ya feeling today" can quickly turn into a serious convo. Again, things that I do not mind and honestly do enjoy talking about, but it's also SO NICE to walk in the door at night and realize I did not have one cancer-filled convo during the day. Cancer has taking over my body and life in so many ways so I try my hardest not to let it take over all of my conversations.
Now I also know I'm contradicting myself here.... I've made it very clear that I would not be this strong if it wasn't for the support of everyone in my life. I think I made it pretty clear in I Just Kicked Cancer's Ass how much I appreciate everyone's support. Hmmm, so how do I keep my support group but also have fun living life pretending I don't have cancer? Live a secret life!
So in my secret life I have become good at separating my groups of friends. Those who know I'm sick and those who don't. And then there's that group of bff's who know all and I intermix :). I've said it a million times and will say it a million times more - I am so incredibly blessed in life to have so many close friends. Aunt Ronna once told me that you don't just "have" friends. You earn them. And I feel proud to look at my group of girlfriends who have all been true friends before the whole cancer thing even came along.
Again, my secret life isn't so secret... especially with FB and JRob's obsession with check-ins :) But I like to pretend it is. Most cancer patients learn to live calm and simple lives. But what do you do when you're a single 20-something with more energy than most chemo patients? Hop around town making endless memories... because you never know which one could be the last.
My sister bites her lip with her sarcastic comments when I'm going through 20 questions with my doc. On my last scans there was one lymph node that showed a bit of activity, but it was so tiny and in my abdomen that they did not think it was the cancer; probably just some sort of infection. "Have you had an infection or anything lately?" "Nope, I've been great. The kiddos had an awful fever thing during the last week of school but I never caught it. My body is probably just fighting that off?" The whole time Krissy is smirking but holding back, "Possibly could it be from the 5am swim in the freezing cold pool? The pool that was not 100% treated yet? Or only getting 2 hours of sleep in between your Friday night festivities and bloody-mary breakfast on Saturday? OH, and then followed by more time in the not-quite-ready pool?" My docs know I like to party; they will joke about me having more than just one beer or that staying out on the dance floor could be what is depleting my energy, not just the chemo! So I know that I don't always make the healthiest of decisions... but don't worry, I do listen to my body when it tells me to slow down.
Maybe my secret life isn't all that secret, but I like to pretend it is. When I'm out and about meeting new people, they want to get to know me for me - not because of my story. But if it comes up, it comes up. Last summer I had the most raspy voice that I blamed on "allergies" when in reality it was from a tumor in my lung. This summer I have zero obvious side effects from the chemo making the truth much easier to hide. No, it doesn't always make sense to hide something that I am most proud of in life. But every now and then it feels good to escape the reality of needles, nausea, and bills and let loose.
Sunday, June 10
Port or no Port? That is the question...
As I mentioned in Downhill!, finding my vein for treatment was AWFUL. And it's not just finding the vein, it's getting the darn thing to actually work. I've told you before that I have what are referred to as "petite" veins. My chemo nurse was kind enough to describe them as "dainty". Pretty much they are just too thin to support an iv. I have a couple that are good, but those are not easy to find either. They use to be great, but over the years the chemo has caused my veins to cripple up, just like my lungs and hormones. Yup, the inside of me is 80. Good thing I still have good skin!
When my nurse tried the first iv I felt my vein blow. But she tried again and when it blew for a second time I actually jumped from the pain. During this time of nurses digging in my arm my sister's job is to distract me with a story. I focus on my breathing and simply listen trying my hardest not to tense up and make her job harder. Well after the first nurse tried and failed, it was time for my sister to go (she had a graduation to hit up). But being the awesome caregiver she is she stuck around for round two. Another nurse tried on my other arm and this time it hurt bad enough I couldn't even hear what Krissy was saying and I started to cry. Another vein blown.
They let me rest for a moment while they tracked down the Charge Nurse to give it a try. This time I made Krissy go, she was already late. Amy was nervous to be filling such big shoes, but she successfully kept my attention directed on her story about her new fish and the nurse was able to get my iv going. (I know, two thoughts are crossing your mind. 1. It doesn't take much to entertain me, and 2. Amy has her very first pet!? It's name is Algebert, go figure, HA!).
But finding the vein isn't the only hard part during treatment - it's also sitting there and feeling the burn from the chemo! We learned the first time the hard way that I need an extra bag of saline to water down the chemo and a warm blanket to wrap up my arm from freezing. My 30 minute bag now takes almost twice as long because it was painful being pushed so fast through my tiny vein. The burn is so intense that I decided to wait the 21 minutes for the chemo to complete before I got up to use the bathroom - I was afraid getting up and moving my arm would only increase the burn!
The nurses think I'm crazy for not having a port. I tell them that at the very beginning we weren't even sure if this drug was going to work. My doctor is against ports because they increase risk for infection (true, one of my catheters gave me an infection back in 2005). So we decided to just wait and see if it worked before we talked about a port. Well, the excitement of remission made me forget and not care about being stabbed multiple times and I've been pushing through ever since. But now that I'm halfway done I'm not sure if I can keep pushing through the pain.
Thing is, I really really really don't want a port. Sounds crazy after all that pain I just described, right? Thing is, it's a surgical procedure to put it in. My neutrophil counts are so low I'd have to go on Neupogen shots (causing my bone marrow to produce white blood cells at a very rapid rate ALSO causing bone pain). Being cut open does not sound desirable. Nor does paying for it. But there are the vain and lifestyle reasons that are really holding me back. First, it sticks out and is noticeable. Second, there goes my summer at the pool and in the sun. Third, it'll be a TOTAL damper on my dating life.
I shared all of this with my nurse coordinator and I have an appointment set up before treatment next week for the port. It makes me tear up thinking I'm not strong enough to do this without the port. A port would be such a relief, but I can already hear the comments. "Is that a straight iron burn or just a good time?!" UG, why are some people so rude and insensitive? And why do I let it get to me?! Ultimately, it's my decision. To get the port or not to get the port.... I'm just torn.
When my nurse tried the first iv I felt my vein blow. But she tried again and when it blew for a second time I actually jumped from the pain. During this time of nurses digging in my arm my sister's job is to distract me with a story. I focus on my breathing and simply listen trying my hardest not to tense up and make her job harder. Well after the first nurse tried and failed, it was time for my sister to go (she had a graduation to hit up). But being the awesome caregiver she is she stuck around for round two. Another nurse tried on my other arm and this time it hurt bad enough I couldn't even hear what Krissy was saying and I started to cry. Another vein blown.
They let me rest for a moment while they tracked down the Charge Nurse to give it a try. This time I made Krissy go, she was already late. Amy was nervous to be filling such big shoes, but she successfully kept my attention directed on her story about her new fish and the nurse was able to get my iv going. (I know, two thoughts are crossing your mind. 1. It doesn't take much to entertain me, and 2. Amy has her very first pet!? It's name is Algebert, go figure, HA!).
But finding the vein isn't the only hard part during treatment - it's also sitting there and feeling the burn from the chemo! We learned the first time the hard way that I need an extra bag of saline to water down the chemo and a warm blanket to wrap up my arm from freezing. My 30 minute bag now takes almost twice as long because it was painful being pushed so fast through my tiny vein. The burn is so intense that I decided to wait the 21 minutes for the chemo to complete before I got up to use the bathroom - I was afraid getting up and moving my arm would only increase the burn!
The nurses think I'm crazy for not having a port. I tell them that at the very beginning we weren't even sure if this drug was going to work. My doctor is against ports because they increase risk for infection (true, one of my catheters gave me an infection back in 2005). So we decided to just wait and see if it worked before we talked about a port. Well, the excitement of remission made me forget and not care about being stabbed multiple times and I've been pushing through ever since. But now that I'm halfway done I'm not sure if I can keep pushing through the pain.
Thing is, I really really really don't want a port. Sounds crazy after all that pain I just described, right? Thing is, it's a surgical procedure to put it in. My neutrophil counts are so low I'd have to go on Neupogen shots (causing my bone marrow to produce white blood cells at a very rapid rate ALSO causing bone pain). Being cut open does not sound desirable. Nor does paying for it. But there are the vain and lifestyle reasons that are really holding me back. First, it sticks out and is noticeable. Second, there goes my summer at the pool and in the sun. Third, it'll be a TOTAL damper on my dating life.
I shared all of this with my nurse coordinator and I have an appointment set up before treatment next week for the port. It makes me tear up thinking I'm not strong enough to do this without the port. A port would be such a relief, but I can already hear the comments. "Is that a straight iron burn or just a good time?!" UG, why are some people so rude and insensitive? And why do I let it get to me?! Ultimately, it's my decision. To get the port or not to get the port.... I'm just torn.
Downhill!
It's all downhill from here - 9 cycles done, only 7 more to go! I wrapped up Cycle #9 on Wednesday, May 30th.
Krissy called me Tuesday as I was making my meals for the next 48 hours to inform me that she had a high school graduation to attend Wednesday evening... during treatment. But being the awesome caregiver she is, she already took care of logistics and had Amy joining us for treatment so she could leave early.
When Krissy picked me up we were both in one of those moods - leaving work was very inconvenient for both of us and we had zero interest in sitting around Siteman. But like the troopers we are we sucked it up and made the best of it. Labs were quick although we learned my neutrophil count (the white blood cells that keep me healthy) are annoyingly low again. Then we waited for the doc. And waited. And waited to the point that we were the last people in the waiting room and they were turning out the lights. Yup, the receptionist forgot about us! To her credit she thought we were waiting for a patient who was currently seeing the doc because by the look of two young girls one of us couldn't possibly have cancer. Lesson learned - never judge a book by the cover. And to her credit she doesn't usually work at that desk and did not recognize us.
We went right in to see my doc who was as upbeat and cheerful as always. My docs are very happy with my progress still. As soon as my resident walked in the door starting with her usual chit chat I IMMEDIATELY asked, "How were the scans?!" I was not interested in going through the same thing as last time, casual discussion about my health sitting on the edge of my seat waiting for earth shattering news. My resident beamed her reassuring smile, "Still gone!" Ahhhh, music to my ears :).
We touched base about my neuropathy - still not bad enough to lower my chemo dosage, although it is getting worse. It's in the tips of my fingers and the bottoms of my feet. I've learned how to function in life without it interrupting my day-to-day tasks for the most part. Although it is very strange to get up in the morning and put my feet on carpet and feel nothing. At least it's not pain or hair loss, I can handle this.
They also started me on new pre-drugs. I switched to a new anti-nausea which lasted longer this time (through Saturday) and worked better. And it was a 30 second push instead of a 30 minute bag which is very time convenient. Especially since we got a late start with my iv. It took 3 nurses and 3 blown veins until they got one that worked. My veins are really starting to feel the effects from the chemo and are struggling. By the third blown vein I was actually in tears. It hurts SO bad to have a needle sliding around under your skin only to pop the vein because it's not strong enough for an iv.
When we left I was only feeling a bit wishy-washy and weak in the knees. I liked the new pre-drugs, it definitely helped with the nausea. But after arriving home that soon changed! Maybe I was using more energy than I had (although really, how much energy does it take to heat up left-overs?) because I found myself running to the bathroom to praise the porcelain. Funny, all I needed to do was lay down on the floor to feel fine again. Lesson learned, no stopping by the kitchen next time, straight to bed for me!
The hangover was pretty bad this past time, but on the upside not long at all! I was feeling myself again by Friday night and was back to normal by the weekend, Hooray!
Krissy called me Tuesday as I was making my meals for the next 48 hours to inform me that she had a high school graduation to attend Wednesday evening... during treatment. But being the awesome caregiver she is, she already took care of logistics and had Amy joining us for treatment so she could leave early.
When Krissy picked me up we were both in one of those moods - leaving work was very inconvenient for both of us and we had zero interest in sitting around Siteman. But like the troopers we are we sucked it up and made the best of it. Labs were quick although we learned my neutrophil count (the white blood cells that keep me healthy) are annoyingly low again. Then we waited for the doc. And waited. And waited to the point that we were the last people in the waiting room and they were turning out the lights. Yup, the receptionist forgot about us! To her credit she thought we were waiting for a patient who was currently seeing the doc because by the look of two young girls one of us couldn't possibly have cancer. Lesson learned - never judge a book by the cover. And to her credit she doesn't usually work at that desk and did not recognize us.
We went right in to see my doc who was as upbeat and cheerful as always. My docs are very happy with my progress still. As soon as my resident walked in the door starting with her usual chit chat I IMMEDIATELY asked, "How were the scans?!" I was not interested in going through the same thing as last time, casual discussion about my health sitting on the edge of my seat waiting for earth shattering news. My resident beamed her reassuring smile, "Still gone!" Ahhhh, music to my ears :).
We touched base about my neuropathy - still not bad enough to lower my chemo dosage, although it is getting worse. It's in the tips of my fingers and the bottoms of my feet. I've learned how to function in life without it interrupting my day-to-day tasks for the most part. Although it is very strange to get up in the morning and put my feet on carpet and feel nothing. At least it's not pain or hair loss, I can handle this.
They also started me on new pre-drugs. I switched to a new anti-nausea which lasted longer this time (through Saturday) and worked better. And it was a 30 second push instead of a 30 minute bag which is very time convenient. Especially since we got a late start with my iv. It took 3 nurses and 3 blown veins until they got one that worked. My veins are really starting to feel the effects from the chemo and are struggling. By the third blown vein I was actually in tears. It hurts SO bad to have a needle sliding around under your skin only to pop the vein because it's not strong enough for an iv.
When we left I was only feeling a bit wishy-washy and weak in the knees. I liked the new pre-drugs, it definitely helped with the nausea. But after arriving home that soon changed! Maybe I was using more energy than I had (although really, how much energy does it take to heat up left-overs?) because I found myself running to the bathroom to praise the porcelain. Funny, all I needed to do was lay down on the floor to feel fine again. Lesson learned, no stopping by the kitchen next time, straight to bed for me!
The hangover was pretty bad this past time, but on the upside not long at all! I was feeling myself again by Friday night and was back to normal by the weekend, Hooray!
Whoooa....
Don't worry, this busy girl hasn't forgotten about posting - I've just been hella busy! Busy having fun :) I've started FOUR posts and just don't finish them and find myself out and about living life to the fullest instead of writing about it. I decided it's time to take a day away from the pool and running around town. Great ready for the blog to blow up!
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