Wednesday, August 31, 2011
Quarter Way Through
Today was exactly one quarter through the radiation treatments. On one hand, I can't believe I've been through 7 treatments already. On the other hand, I still have a long way to go. At least at this point, I have my morning routine down and know the valet at the hospital very well. As many of you know me well, you know I prefer a regular routine!
Tuesday, August 30, 2011
Blood Results
Today was a chemo day. I have to get my pump refilled and needle changed once a week. It's actually quiet easy and quick. They draw blood from the port and remove the needle. Once the blood work is back, the nurse inserts a new needle, hooks me back up and I'm on my way.
The interesting thing about today was seeing my blood results. They were fine; no worries there. They did, however, change. I had always been proud of my excellent H&H and was always a good blood donor. There was a drop this week and it's to be expected but it made me realize that I am getting treatment. I have felt really well over the last week or so and have gotten used to carrying around the pump. Still, today, seeing my blood results made me realize that although I feel good and actually don't even realize half the time that I am hooked up to a pump, that I am receiving radiation and chemo. It's a sign that the treatment is impacting me even though I don't feel so.
No one expects my blood counts to ever be an issue during my treatment and they probably won't get anywhere close to needing a transfusion. Still, it was a real eye opener today.
The interesting thing about today was seeing my blood results. They were fine; no worries there. They did, however, change. I had always been proud of my excellent H&H and was always a good blood donor. There was a drop this week and it's to be expected but it made me realize that I am getting treatment. I have felt really well over the last week or so and have gotten used to carrying around the pump. Still, today, seeing my blood results made me realize that although I feel good and actually don't even realize half the time that I am hooked up to a pump, that I am receiving radiation and chemo. It's a sign that the treatment is impacting me even though I don't feel so.
No one expects my blood counts to ever be an issue during my treatment and they probably won't get anywhere close to needing a transfusion. Still, it was a real eye opener today.
Monday, August 29, 2011
One Week Down, 5 To Go
With one week of treatment under my belt, I feel like I am finally on my way on this journey. Overall, the week has been without any complaints or major issues. I have had to learn how to not forget my pump when getting up (I had about 6 close calls) and how to shower with keeping the pump and port dry and get me clean. It's harder than you may think! I have also had to learn which clothes are easiest to wear with the pump.
I had a couple great moments this week. The first was Wednesday night when I had to go to dinner with a vendor. It was only my second day of treatment and I was still getting used to everything. At dinner I was able to tuck my pump in the chair with me and no one could see the dressing on my port. After a couple of hours of dinner I completely forgot that I was hooked up to anything and getting chemo. It was a really great feeling to know that as long as I am feeling well, this pump and chemo is not going to consume my life or keep me from doing things. It was also really nice to just "forget" for an evening that I was on this journey.
The other great moment is when I had to wear a suit on Friday to work. I was apprehensive how I was going to wear the suit being all hooked up but I managed to feed the tubing through the sleeve of my shirt and no one even noticed that I had the pump with me. When I looked in the mirror getting dressed, it was like any other day going to work. Again, I forgot that I was even hooked up to the pump. I made sure I got to each of my meetings early on Friday and tucked the pump on my lap. No one even knew I had the pump except when it made its occassional noise. Even then, I don't think they knew what the noise was!
I know I still face 5 more weeks of treatment but the little successes I had this past week have given me the confidence I need to make it through. Of course I may start to get warn out or have other side effects from the treatment but I can't see any of that holding me back!
I had a couple great moments this week. The first was Wednesday night when I had to go to dinner with a vendor. It was only my second day of treatment and I was still getting used to everything. At dinner I was able to tuck my pump in the chair with me and no one could see the dressing on my port. After a couple of hours of dinner I completely forgot that I was hooked up to anything and getting chemo. It was a really great feeling to know that as long as I am feeling well, this pump and chemo is not going to consume my life or keep me from doing things. It was also really nice to just "forget" for an evening that I was on this journey.
The other great moment is when I had to wear a suit on Friday to work. I was apprehensive how I was going to wear the suit being all hooked up but I managed to feed the tubing through the sleeve of my shirt and no one even noticed that I had the pump with me. When I looked in the mirror getting dressed, it was like any other day going to work. Again, I forgot that I was even hooked up to the pump. I made sure I got to each of my meetings early on Friday and tucked the pump on my lap. No one even knew I had the pump except when it made its occassional noise. Even then, I don't think they knew what the noise was!
I know I still face 5 more weeks of treatment but the little successes I had this past week have given me the confidence I need to make it through. Of course I may start to get warn out or have other side effects from the treatment but I can't see any of that holding me back!
Wednesday, August 24, 2011
One Day In
One day in and no complaints. I am getting used to carrying around the pump (not a fanny pack!). They could make it a little lighter but it's not so bad. I managed to sleep OK last night and not get all tangled in the tubing. I even successfully had a pretty good shower this morning.
I haven't really felt ill or nauseous or tired or anything. In fact, after dinner last night, I went and played miniature golf and then out to Rita's for some yummy Italian ice. Of course this is an adjustment and I know that as time goes on, side effects can arise but I'm just taking it one day at a time. I will deal with whatever I need to when the time comes and I'm not going to stress about it if I don't have to.
The daily radiation treatments are quick and easy. The staff at the radiation center are amazing and really all I have to do is lay still on a table. I think I can handle that. My appointments are at 7:45 every morning, Monday - Friday, and the appointment takes less than 15 minutes. Today I even made it to work by 8:30. And now, just 28 more treatments to go!
I haven't really felt ill or nauseous or tired or anything. In fact, after dinner last night, I went and played miniature golf and then out to Rita's for some yummy Italian ice. Of course this is an adjustment and I know that as time goes on, side effects can arise but I'm just taking it one day at a time. I will deal with whatever I need to when the time comes and I'm not going to stress about it if I don't have to.
The daily radiation treatments are quick and easy. The staff at the radiation center are amazing and really all I have to do is lay still on a table. I think I can handle that. My appointments are at 7:45 every morning, Monday - Friday, and the appointment takes less than 15 minutes. Today I even made it to work by 8:30. And now, just 28 more treatments to go!
Tuesday, August 23, 2011
A Day to Remember
Today was an important day in my life. Not only did I start my chemo and radiation, but there was an earthquake felt in Pittsburgh. I guess I'll never forget this day as 5 years from now I'll be sitting with some friends and they will be remembering the day Pittsburgh experienced an earthquake and I will remember I was receiving my first radiation treatment at that moment. Maybe it was a message from a higher being!
Today was an interesting day. I anticipated on being in and out of the hospital in under 40 minutes but that was just not to be. Everyone I was with was very nice and it's not such a bad place to have to be if you have to just be sitting somewhere. I am very grateful that I have the port because one little needle stick was all I had to get today. Some blood was drawn and a tiny tube connected that would later be hooked up to the IV tubing of the pump. It's nice that I only have to go through that once a week.
Eventually I was hooked up to the chemo which is given through a pump in a fanny pack about the size of a tissue box.
Every once in a while, the pump makes a light noise, much the same as an old camera winding film. I am sure I will hear it all the time for the next couple of days and then forget about it. It will take some getting used to to remember to take the pump with me everywhere I go and to figure out how to get dressed every day weaving the tubing through my clothes. At least I vaguely remember some tricks from nursing school!
Once I was settled in with the pump and we were sure it was running well, the nurse gave me lots of instructions and a ton of books to read. It must be for people who like to read or have nothing better to do. The one cool thing about the infusion center is that they have a whole area of snacks including hot chocolate! Like I said, not a bad place to be if you just have to be sitting around somewhere.
Next I was off to radiation. It's actually pretty easy. All I have to do is climb up on the table, lay down, and stay still. The actual radiation itself takes just a couple of minutes. I also agreed to the tattoos. They are so small you wouldn't even know they were tattoos unless I pointed them out to you and it was very quick and painless. It will be nice to get the old marking scrubbed off. That is, if I figure out how to shower quickly and easily.
Today was an interesting day. I anticipated on being in and out of the hospital in under 40 minutes but that was just not to be. Everyone I was with was very nice and it's not such a bad place to have to be if you have to just be sitting somewhere. I am very grateful that I have the port because one little needle stick was all I had to get today. Some blood was drawn and a tiny tube connected that would later be hooked up to the IV tubing of the pump. It's nice that I only have to go through that once a week.
Eventually I was hooked up to the chemo which is given through a pump in a fanny pack about the size of a tissue box.
Every once in a while, the pump makes a light noise, much the same as an old camera winding film. I am sure I will hear it all the time for the next couple of days and then forget about it. It will take some getting used to to remember to take the pump with me everywhere I go and to figure out how to get dressed every day weaving the tubing through my clothes. At least I vaguely remember some tricks from nursing school!
Once I was settled in with the pump and we were sure it was running well, the nurse gave me lots of instructions and a ton of books to read. It must be for people who like to read or have nothing better to do. The one cool thing about the infusion center is that they have a whole area of snacks including hot chocolate! Like I said, not a bad place to be if you just have to be sitting around somewhere.
Next I was off to radiation. It's actually pretty easy. All I have to do is climb up on the table, lay down, and stay still. The actual radiation itself takes just a couple of minutes. I also agreed to the tattoos. They are so small you wouldn't even know they were tattoos unless I pointed them out to you and it was very quick and painless. It will be nice to get the old marking scrubbed off. That is, if I figure out how to shower quickly and easily.
Monday, August 22, 2011
The Eve Before the Start
They say an eve is the evening before a special day. I'm not sure if I would consider tomorrow a special day but it is a day to mark during this incredible journey - start of chemo and radiation. I have been pushing for this day to come. After all, the sooner I get started, the sooner I can finish. But now that it's here, there of course is some anxiety. What side effects will I get? Will I feel different? How is being hooked up to a pump going to impact my life? I guess I will find out the answers to these questions and more in the coming weeks.
I did decide to allow the permanent tattoos to be placed. I was showering the other morning and looking at all the markings on my hips. It was kind of crazy that I thought it was OK to have all these markings but not two little dots. The other thing I came to realize is this time in my life will become part of me. As much as I see it as a bunch of tasks I just need to get through it will help form who I will be after I am through with all of my treatments. I think I felt if I had the tattoos, this whole journey would never go away but tattoos or not, the journey will be part of me for the rest of my life.
OK, enough mushy stuff. I get the fanny pack tomorrow. I can't imagine it being something that I will want to be seen with. Afterall, who wants to be seen wearing a fanny pack. First order of business will be to either find something better than a fanny pack or make the fanny pack look like something I would want to be seen with! More to come on the fanny pack.
I did decide to allow the permanent tattoos to be placed. I was showering the other morning and looking at all the markings on my hips. It was kind of crazy that I thought it was OK to have all these markings but not two little dots. The other thing I came to realize is this time in my life will become part of me. As much as I see it as a bunch of tasks I just need to get through it will help form who I will be after I am through with all of my treatments. I think I felt if I had the tattoos, this whole journey would never go away but tattoos or not, the journey will be part of me for the rest of my life.
OK, enough mushy stuff. I get the fanny pack tomorrow. I can't imagine it being something that I will want to be seen with. Afterall, who wants to be seen wearing a fanny pack. First order of business will be to either find something better than a fanny pack or make the fanny pack look like something I would want to be seen with! More to come on the fanny pack.
Thursday, August 18, 2011
The Next Phase is Ready to Begin
I can only begin to understand what transplant patients must feel like after today's experience. I had been waiting for the radiation team to call me to set up my simulation, the last step prior to beginning treatment. I received a call around 9:30 this morning and at 12:15 I was at the hospital in the radiation room going through the simulation. After the 10 minutes of simulation, my chemo was set up and my radiation treatments for the next 6 weeks were scheduled. It all just happened so fast that I really didn't even have time to think or react.
So, on Tuesday, I will start my chemotherapy which will be a continuous infusion. I will have the chemo changed every seven days for the next six weeks. The process, from what I have been told is fairly simple. My port is accessed and then dressed and I am hooked up to a fanny pack (I know, can't they come up with something better!) that I will carry around for a week at a time. The fanny pack contains the chemo agent and a small pump and is very light weight. Piece of cake, right? Except showering, dressing and sleeping will all be a challenge. I imagine once I get it all figured out, the six weeks will be up and I will be done.
Apparently the radiation is equally as easy. I go into the treatment room, verify my picture on the computer and state my name and birth date. I lay down on the table (not so comfortable), stay still and within 15 minutes I am done. Sounds easy enough, right? We'll see. Only time will tell, I guess.
There is still the unsettled business of the tattoos. They wanted to do the permanent tattoos today but I put on the tears and they said they would see if the new markings will last. For some reason, I really, really don't want the permanent tattoos. I know they are small and no big deal but I just don't want them. So, they will check the temporary markings on Tuesday and make a decision. Keep your fingers crossed!
So, on Tuesday, I will start my chemotherapy which will be a continuous infusion. I will have the chemo changed every seven days for the next six weeks. The process, from what I have been told is fairly simple. My port is accessed and then dressed and I am hooked up to a fanny pack (I know, can't they come up with something better!) that I will carry around for a week at a time. The fanny pack contains the chemo agent and a small pump and is very light weight. Piece of cake, right? Except showering, dressing and sleeping will all be a challenge. I imagine once I get it all figured out, the six weeks will be up and I will be done.
Apparently the radiation is equally as easy. I go into the treatment room, verify my picture on the computer and state my name and birth date. I lay down on the table (not so comfortable), stay still and within 15 minutes I am done. Sounds easy enough, right? We'll see. Only time will tell, I guess.
There is still the unsettled business of the tattoos. They wanted to do the permanent tattoos today but I put on the tears and they said they would see if the new markings will last. For some reason, I really, really don't want the permanent tattoos. I know they are small and no big deal but I just don't want them. So, they will check the temporary markings on Tuesday and make a decision. Keep your fingers crossed!
Monday, August 15, 2011
More Waiting
I had a fabulous fun-filled weekend and back to work again this rainy Monday morning. I received the results from my PET scan today: Totally Negative! What does that mean? Well, it means there isn't cancer floating around in other parts of my body and it's isolated to the rectum. Unfortunately, I still have to have treatment but at least the cancer was caught very early. Couldn't ask for better news.
This is a time for waiting for me. The scans are done. The port is in. Everyone is in stand-by. We are just waiting for the radiation formula to be completed. Hopefully later this week I will go for the simulation where they test all the calculations without giving any radiation. Once the simulation is successful, I will be ready to start my treatment. I am shooting to start on August 23. After all, the sooner I get started, the sooner I finish.
A lot of friends and family have been asking how I am feeling. Well, I'm feeling like I was before I found out I had cancer. I'm trying to stay active and continue as many activities as I can. My port site has healed and honestly I forget it's even there. Emotionally I'm doing well too. Yes, of course I have the moments of wondering why me, but over all I feel I am going to approach this journey with a positive attitude and just Ride the Wave.
This is a time for waiting for me. The scans are done. The port is in. Everyone is in stand-by. We are just waiting for the radiation formula to be completed. Hopefully later this week I will go for the simulation where they test all the calculations without giving any radiation. Once the simulation is successful, I will be ready to start my treatment. I am shooting to start on August 23. After all, the sooner I get started, the sooner I finish.
A lot of friends and family have been asking how I am feeling. Well, I'm feeling like I was before I found out I had cancer. I'm trying to stay active and continue as many activities as I can. My port site has healed and honestly I forget it's even there. Emotionally I'm doing well too. Yes, of course I have the moments of wondering why me, but over all I feel I am going to approach this journey with a positive attitude and just Ride the Wave.
Wednesday, August 10, 2011
To Tattoo or Not To Tattoo
This morning I had a CT scan to prepare for my radiation treatments. Apparently they take a bunch of images, apply some fancy math via a computer and come up with a treatment plan. I would hate to know how they did radiation treatment prior to all the technology we have today! Now if they could just make the table a little more comfortable....
So, as they are preparing the CT scan, I was tattooed with fake tattoos like children (and I guess some adults) use. They are about the size of a half dollar with an "X" through them. So I asked the technian if I was receiving these instead of real tattoos and he told me that when I go for my final appointment before treatment, I would receive the real tattoos. :-(
I guess the technian realized I was less than happy to receive real tattoos because when the scanning was done, he came back and told me that if I am really, really careful with the fake tattoos and if I really, really don't want the real tattoos that I could probably avoid them. He told me they would just be little dots like freckles. The problem is that I don't have freckles where the tattoos would go! So, this week, I will be taking very, very good care of the tattoos!
So, as they are preparing the CT scan, I was tattooed with fake tattoos like children (and I guess some adults) use. They are about the size of a half dollar with an "X" through them. So I asked the technian if I was receiving these instead of real tattoos and he told me that when I go for my final appointment before treatment, I would receive the real tattoos. :-(
Tuesday, August 9, 2011
The Power of the Shower
I have always known the healing power of the shower. When I was growing up and didn't feel well enough to go to school, my mom always made me take a shower before making the call to stay home. If after taking a shower I still didn't feel well, then I could stay home. Honestly, I can't remember a time when I took a shower and ended up staying home. There is just something about a nice, warm, long shower to make you feel better.
Over the last five days, I had a dressing over my port and couldn't get it wet. The nurse at the hospital encouraged me to try Glad Press and Seal wrap to keep my dressing dry. That stuff is AMAZING. It sticks right to your skin and the dressing and kept everything dry. Still, I couldn't really move my arm that well and I was trying not to get the area too wet so there was no standing around in the shower. That was until this morning. The dressing came off last night and I took the longest shower this morning. It felt sooo good!
I know once I start chemo, I'll have six weeks of showering with Glad Press and Seal and trying not to get the pump wet. Let's just say I will be taking long showers until that day comes. And the day the chemo is over, I am sure I will drain the hot water tank!
Over the last five days, I had a dressing over my port and couldn't get it wet. The nurse at the hospital encouraged me to try Glad Press and Seal wrap to keep my dressing dry. That stuff is AMAZING. It sticks right to your skin and the dressing and kept everything dry. Still, I couldn't really move my arm that well and I was trying not to get the area too wet so there was no standing around in the shower. That was until this morning. The dressing came off last night and I took the longest shower this morning. It felt sooo good!
I know once I start chemo, I'll have six weeks of showering with Glad Press and Seal and trying not to get the pump wet. Let's just say I will be taking long showers until that day comes. And the day the chemo is over, I am sure I will drain the hot water tank!
Monday, August 8, 2011
Still Getting Ready
It feels like it is taking forever to get this show on the road! I probably won't start any treatments until the week of August 22. That's another 2 weeks. My portacath site is healing well. I get to take the dressing off today and take a real shower. I can't wait! I am so itchy from the dressing. This week I'll be having a PET scan and CT scan to get ready for radiation. Overall, though, it should be a quiet 2 weeks while waiting to start.
So what does one do while just waiting? Well, I've tried to figure out all the holidays, birthdays, anniversaries, etc that will occur over the next 2 months and get everything I need so I don't have to worry about it during my treatments. I've also bought all the items suggested by my doctors that I may need to address the side effects of the treatments. I plan on packing a bag in my car so if I'm out and about and don't feel like heading home, I can crash at my friend's house. I've taken up working on jigsaw puzzles and have procured some additional puzzles in case I just feel like hanging out at home and not being out. I have even gone as far as considering to read. I know. Crazy! But, I think if I find the right book, perhaps I may like reading.
Overall, I am feeling really well. I think I am pretty much recovered from my surgery two weeks ago. The port site is coming along and will actually be used for the first time this week for my scans. I'm feeling pretty up beat and ready to get this journey moving forward.
So what does one do while just waiting? Well, I've tried to figure out all the holidays, birthdays, anniversaries, etc that will occur over the next 2 months and get everything I need so I don't have to worry about it during my treatments. I've also bought all the items suggested by my doctors that I may need to address the side effects of the treatments. I plan on packing a bag in my car so if I'm out and about and don't feel like heading home, I can crash at my friend's house. I've taken up working on jigsaw puzzles and have procured some additional puzzles in case I just feel like hanging out at home and not being out. I have even gone as far as considering to read. I know. Crazy! But, I think if I find the right book, perhaps I may like reading.
Overall, I am feeling really well. I think I am pretty much recovered from my surgery two weeks ago. The port site is coming along and will actually be used for the first time this week for my scans. I'm feeling pretty up beat and ready to get this journey moving forward.
Thursday, August 4, 2011
Storms Move Quickly
Growing up in New Jersey, I should know that storms can change direction and impact at any time. I remember living through several Nor'easters that either fizzled out before arriving in NJ or picking up speed and flooding Sea Bright or dumping snow on the entire coast. As much as forecasters try, they really can't predict the weather. Well, I'm learning, I can't really predict everything that will happen on this journey.
I was planning on getting my portacath on Friday afternoon as I had 2 doctors appointments and it would mean just one vacation day from work. Well, that schedule didn't really work out for the hospital. So, around 5 pm on Tuesday evening, I learned that I would be getting my portacath Wednesday afternoon. I was quickly able to find a ride (Thanks Nicole!) and arrange my work schedule to make this appointment.
In medicine, a port (or portacath) is a small medical appliance that is installed beneath the skin. A catheter connects the port to a vein. Under the skin, the port has a septum through which drugs can be injected and blood samples can be drawn many times, usually with less discomfort for the patient than a more typical "needle stick".
The hospital staff yesterday were amazing. I was awake for the entire procedure but they all made sure I was as comfortable as possible. They provided kindness as well as a few jokes and even turned on the Best of the 80's Mix in the OR. How can anything go wrong when Van Halen's "Jump" is playing? The surgeon did his best to make sure the port was not placed where my backpack straps would rest on my shoulders or where it could be easily seen. I was in and out in just a couple of hours and felt well enough to go to the Pirates game in the evening. Shame it had to rain :-(
I had mixed feelings about getting the port. It is definitely the best thing I can do medically as I don't have great veins for drawing blood or receiving IV's. Still, it's a symbol that I am ill and that I will be receiving medical care. I know when this journey is all over, the port will come out and there will just be a little scar there but for the next 9 months or so, it's there and it's a reminder no matter how great I am feeling, the journey continues.
I was planning on getting my portacath on Friday afternoon as I had 2 doctors appointments and it would mean just one vacation day from work. Well, that schedule didn't really work out for the hospital. So, around 5 pm on Tuesday evening, I learned that I would be getting my portacath Wednesday afternoon. I was quickly able to find a ride (Thanks Nicole!) and arrange my work schedule to make this appointment.
In medicine, a port (or portacath) is a small medical appliance that is installed beneath the skin. A catheter connects the port to a vein. Under the skin, the port has a septum through which drugs can be injected and blood samples can be drawn many times, usually with less discomfort for the patient than a more typical "needle stick".
The hospital staff yesterday were amazing. I was awake for the entire procedure but they all made sure I was as comfortable as possible. They provided kindness as well as a few jokes and even turned on the Best of the 80's Mix in the OR. How can anything go wrong when Van Halen's "Jump" is playing? The surgeon did his best to make sure the port was not placed where my backpack straps would rest on my shoulders or where it could be easily seen. I was in and out in just a couple of hours and felt well enough to go to the Pirates game in the evening. Shame it had to rain :-(
I had mixed feelings about getting the port. It is definitely the best thing I can do medically as I don't have great veins for drawing blood or receiving IV's. Still, it's a symbol that I am ill and that I will be receiving medical care. I know when this journey is all over, the port will come out and there will just be a little scar there but for the next 9 months or so, it's there and it's a reminder no matter how great I am feeling, the journey continues.
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