Day 11, The start of Week Three / May 15, 2017
Yesterday started of pretty rough. I still had no energy but decided to go to church with Kim since it was Mothers Day. After about 15 minutes in, I let Kim know I had to leave. Even though I was only sitting in the seat it was still too much for me.
I came home and took a nap for a few hours. Later that day I felt a little more clear minded and felt pretty good actually. That was the best I felt ALL week! At that moment, I realized how exhausted I was and how much of a fog and depression that I have been in the entire week. When you are in it, you don't realize it! I spent the afternoon with the whole family and it felt good to talk, laugh and actually feel normal again. At one point Kim came over and said, "I actually forgot you were sick for a little while". It is these small challenges that I am working for.
Ryan accompanied Kim and I to treatment today. I called Dr. Tseng, (my Chemo Dr.) on our way to treatment so I could discuss my fogginess and depression with her BEFORE chemo today because I'm not sure if I could mentally do another week like last week. When I told the nurse this, she immediately got Dr. Tseng on the phone to talk with me. After listening to me tell her how I was feeling and the dark places that I have mentally gone too this week she still thought that it would be in my best interest to take chemo today as planned and to come up and see her after treatment to discuss this further. She assured me that what I was feeling was normal and that she would talk in more detail of options when I came to see her later that day. Kim and I agreed to go through with treatment and then see what she had to say afterwards. Because ultimately our goal is the same as Dr. Tseng's, to be cured.
So, we started off by getting my blood work taken to see if my numbers were high enough to even take chemotherapy today. After I had the blood drawn I went to radiation to get cooked a little more. I felt pretty good, surprisingly since it was morning and mornings are never good for me. I'm always nauseous in the mornings and the hour car ride during I4 rush hour is a killer! It was then that it hit me, hhhmmmm, Ryan has a similar frame to mine, just a heck of a lot skinnier. On the days that I don't feel up to the radiation treatment he can fill in for me! The mask should fit close enough, right? Well he did not like that plan at all and my two regular techs, whom are two of the greatest cheerleaders ever, didn't buy into it either! I will have to keep working on that idea.
After radiation I threw away another marble! The jar is now two thirds full, (or as Kim sees it 2/3 empty) Perspective I guess! Lol but I do see progress. After radiation on Mondays I am required to go see my radiation doctor for an examination and to talk about progress. His idea of progress is how far I have deteriorated, this is NOT my idea of progress at all, Lol.
When he came into the room he started off with, "So, I hear you had some depression issues last week". This is why I like the UF Cancer center, all of the doctors seem to be in constant communication with each other. I explained that I was and why. He listened very intently and said it was not depression, it is more like bereavement. I was initially confused, then he explained it in a way that made perfect sense.
He said that when a patient has a stroke, heart attack or is involved in a serious accident, they know that they are going to experience limitations and there is physical feedback when they look in the mirror. Cancer patients have to work through these same limitations, and have to go through the healing process as they are being treated, but there are no outward signs of why. He explained that many people will tell you how good you look, not knowing internally you will be feeling you are on the brink of death. This is very frustrating! This is such a common occurrence in cancer patients, and I am just one of many. He said that the "healthy" cancer patients who are not use to "living sick" doesn't know how to be sick. They are use to being on the go and "doing" but all of a sudden cannot anymore. That you feel like you have lost who you are but when you look in the mirror you see the same person as before. He said that even you fall victim of that. He said that unlike the stroke victim, or the car wreck patient or the heart attack patient, that my "disabilities" should be restored afterwards. Some things may not be totally restored but for the most part it is only temporary. A nightmare that you can put behind you. However he did suggest that I speak with a cancer counselor they offer there to help work through this. I did agree that this would be a great idea so I have an appointment scheduled for later this week.
Next I went over to the chemotherapy pods, and found out that they had lost my blood work from the morning, really!?!?! I had to get more blood drawn and it takes an hour for the results to come back and make sure the numbers are high enough for treatment! A little frustrated! I need all the red blood cells I can keep!! Lol Our nurse was fantastic though, she started me on some fluids to help with the time at the end and put a rush on the blood work. As it was, my numbers were all good, a little lower in some areas but still good enough for treatment, so I finished up dose number three of chemo!
After chemo we went up to see Dr.Tseng as we discussed earlier in the morning. She said that she was hoping to find something in my blood work that would explain as to why I was having the extreme exhaustion and fatigue. Unfortunately, she was not able to find anything. I guess I should be happy about that! She said part of the problem is that I may be hyper-sensitive to the chemo and because of that, the side effects as well. She said that there were a couple of options they could to try and see if any would help. Option 1; They talked about adding Ritalin to my list of medications. Even though it calms ADHD people down, that it can have the opposite affect as well. But I seem to be over sensitive to a lot of medicines that they'd hate to introduce a new one to me if they didn't have too. Option 2; to "play" with lower the dose of steroids that I take with my anti nausea medicine to help reduce nausea because they could be part of the contribution of making me so tired. Option 3; is to lower the dose of Cisplatin (chemo) and option 4; was to change the chemo all together. She is standing on that the Cisplatin and Radiation together is my BEST chance of beating this so she really doesn't want to go with option 3 or 4 if we don't have too. So after talking about all 4 of these options we decided as a team to go with option 2 this week! With the understanding that if I start puking again, I'm back on them all the way and we try option 1! Because I definitely don't want a repeat of week 1!!
Here is to hoping that week three will be a better.....no a good week! And that these meds will all get figured out before we get to hell week! I can't thank my Team of Dr's enough for actually caring, listening and empathizing with me along this journey.
I came home and took a nap for a few hours. Later that day I felt a little more clear minded and felt pretty good actually. That was the best I felt ALL week! At that moment, I realized how exhausted I was and how much of a fog and depression that I have been in the entire week. When you are in it, you don't realize it! I spent the afternoon with the whole family and it felt good to talk, laugh and actually feel normal again. At one point Kim came over and said, "I actually forgot you were sick for a little while". It is these small challenges that I am working for.
Ryan accompanied Kim and I to treatment today. I called Dr. Tseng, (my Chemo Dr.) on our way to treatment so I could discuss my fogginess and depression with her BEFORE chemo today because I'm not sure if I could mentally do another week like last week. When I told the nurse this, she immediately got Dr. Tseng on the phone to talk with me. After listening to me tell her how I was feeling and the dark places that I have mentally gone too this week she still thought that it would be in my best interest to take chemo today as planned and to come up and see her after treatment to discuss this further. She assured me that what I was feeling was normal and that she would talk in more detail of options when I came to see her later that day. Kim and I agreed to go through with treatment and then see what she had to say afterwards. Because ultimately our goal is the same as Dr. Tseng's, to be cured.
So, we started off by getting my blood work taken to see if my numbers were high enough to even take chemotherapy today. After I had the blood drawn I went to radiation to get cooked a little more. I felt pretty good, surprisingly since it was morning and mornings are never good for me. I'm always nauseous in the mornings and the hour car ride during I4 rush hour is a killer! It was then that it hit me, hhhmmmm, Ryan has a similar frame to mine, just a heck of a lot skinnier. On the days that I don't feel up to the radiation treatment he can fill in for me! The mask should fit close enough, right? Well he did not like that plan at all and my two regular techs, whom are two of the greatest cheerleaders ever, didn't buy into it either! I will have to keep working on that idea.
After radiation I threw away another marble! The jar is now two thirds full, (or as Kim sees it 2/3 empty) Perspective I guess! Lol but I do see progress. After radiation on Mondays I am required to go see my radiation doctor for an examination and to talk about progress. His idea of progress is how far I have deteriorated, this is NOT my idea of progress at all, Lol.
When he came into the room he started off with, "So, I hear you had some depression issues last week". This is why I like the UF Cancer center, all of the doctors seem to be in constant communication with each other. I explained that I was and why. He listened very intently and said it was not depression, it is more like bereavement. I was initially confused, then he explained it in a way that made perfect sense.
He said that when a patient has a stroke, heart attack or is involved in a serious accident, they know that they are going to experience limitations and there is physical feedback when they look in the mirror. Cancer patients have to work through these same limitations, and have to go through the healing process as they are being treated, but there are no outward signs of why. He explained that many people will tell you how good you look, not knowing internally you will be feeling you are on the brink of death. This is very frustrating! This is such a common occurrence in cancer patients, and I am just one of many. He said that the "healthy" cancer patients who are not use to "living sick" doesn't know how to be sick. They are use to being on the go and "doing" but all of a sudden cannot anymore. That you feel like you have lost who you are but when you look in the mirror you see the same person as before. He said that even you fall victim of that. He said that unlike the stroke victim, or the car wreck patient or the heart attack patient, that my "disabilities" should be restored afterwards. Some things may not be totally restored but for the most part it is only temporary. A nightmare that you can put behind you. However he did suggest that I speak with a cancer counselor they offer there to help work through this. I did agree that this would be a great idea so I have an appointment scheduled for later this week.
Next I went over to the chemotherapy pods, and found out that they had lost my blood work from the morning, really!?!?! I had to get more blood drawn and it takes an hour for the results to come back and make sure the numbers are high enough for treatment! A little frustrated! I need all the red blood cells I can keep!! Lol Our nurse was fantastic though, she started me on some fluids to help with the time at the end and put a rush on the blood work. As it was, my numbers were all good, a little lower in some areas but still good enough for treatment, so I finished up dose number three of chemo!
After chemo we went up to see Dr.Tseng as we discussed earlier in the morning. She said that she was hoping to find something in my blood work that would explain as to why I was having the extreme exhaustion and fatigue. Unfortunately, she was not able to find anything. I guess I should be happy about that! She said part of the problem is that I may be hyper-sensitive to the chemo and because of that, the side effects as well. She said that there were a couple of options they could to try and see if any would help. Option 1; They talked about adding Ritalin to my list of medications. Even though it calms ADHD people down, that it can have the opposite affect as well. But I seem to be over sensitive to a lot of medicines that they'd hate to introduce a new one to me if they didn't have too. Option 2; to "play" with lower the dose of steroids that I take with my anti nausea medicine to help reduce nausea because they could be part of the contribution of making me so tired. Option 3; is to lower the dose of Cisplatin (chemo) and option 4; was to change the chemo all together. She is standing on that the Cisplatin and Radiation together is my BEST chance of beating this so she really doesn't want to go with option 3 or 4 if we don't have too. So after talking about all 4 of these options we decided as a team to go with option 2 this week! With the understanding that if I start puking again, I'm back on them all the way and we try option 1! Because I definitely don't want a repeat of week 1!!
Here is to hoping that week three will be a better.....no a good week! And that these meds will all get figured out before we get to hell week! I can't thank my Team of Dr's enough for actually caring, listening and empathizing with me along this journey.
Comments
Post a Comment