Monday, April 30, 2012
Lost?
Had treatment scheduled today;however, the white blood count value failed! It should have been a least 1.5 (I'm not sure what the units are for that), but the value was 1.4. I left treatment for the first time based on these tests, but this is typical for chemo. I will be doing blood transfusion since the red blood value is lower too, but the white values just increase on their own. No worries. Things happen for a reason!
Sunday, April 8, 2012
Finally
Happy Easter!
It has obviously been a long time since I wrote last on this blog, but at least I'm corresponding again. I will explain in detail why I didn't add blog posts within the last few months at a later time. However, from a simple perspective things didn't work well or make me happy when trying to organize a clinical trial. Organizing the trial frankly was impossible and really made me depressed.
Tomorrow I am going back to the Philly Hospital for treatment. I had a CAT scan after 6 weeks of chemo to determine whether I can continue the treatment. Based on the clinical rules, Dr. S strongly believed that I was eligible to continue! Most of my tumors did not change size, which is actually a positive result. I know it sounds strange and odd, but it actually is good data. Overall, it takes quite a bit of time for the body to respond to chemo so if most of the tumors are not increasing in size things are good!
I will try to mention more soon, but I can't promise of course! I generally feel pretty off during the first week so it might be some time before you hear from me again. Interestingly, I get treatment every 3 weeks so I typically feel much better at the end. Wish me luck and prayers that this is really working!
It has obviously been a long time since I wrote last on this blog, but at least I'm corresponding again. I will explain in detail why I didn't add blog posts within the last few months at a later time. However, from a simple perspective things didn't work well or make me happy when trying to organize a clinical trial. Organizing the trial frankly was impossible and really made me depressed.
Tomorrow I am going back to the Philly Hospital for treatment. I had a CAT scan after 6 weeks of chemo to determine whether I can continue the treatment. Based on the clinical rules, Dr. S strongly believed that I was eligible to continue! Most of my tumors did not change size, which is actually a positive result. I know it sounds strange and odd, but it actually is good data. Overall, it takes quite a bit of time for the body to respond to chemo so if most of the tumors are not increasing in size things are good!
I will try to mention more soon, but I can't promise of course! I generally feel pretty off during the first week so it might be some time before you hear from me again. Interestingly, I get treatment every 3 weeks so I typically feel much better at the end. Wish me luck and prayers that this is really working!
Saturday, February 11, 2012
Grandma
It was wonderful to have my parents visit this weekend. We adjusted how my Dad would interact with the children since he still has medical restrictions from the pacemaker surgery. Braeden was so happy to see his grandparents and of course Colton at 10.5 months definitely recognized them and was extremely happy and playful as well.
My mother received a phone call from one of her brothers who lives in California while she was visiting. She receives very infrequent phone calls from him. Unfortunately, there was important reasoning for the call; my grandmother is in the hospital. The doctors diagnosed her with cancer where there are nodules in her liver and lungs. They stated that she will only last for a few days.
Naturally this is another sad and disappointing situation. In some respects, we can at least think that she lived a long life. However, unfortunately for me and my brother, we did not see her very often especially as we got older. She definitely was aware of everything we did since my mom spoke to her weekly and we also thought she had some psychic ability. It seems that she always knew about things that occurred without us saying anything! Anyway, I'm hoping for success in any appropriate fashion; if the doctors are wrong then she will feel wonderful and be able to fight through cancer! However, if the doctors are correct, then she and God will be together and she can continue to watch all of us.
Love you Grandma.
My mother received a phone call from one of her brothers who lives in California while she was visiting. She receives very infrequent phone calls from him. Unfortunately, there was important reasoning for the call; my grandmother is in the hospital. The doctors diagnosed her with cancer where there are nodules in her liver and lungs. They stated that she will only last for a few days.
Naturally this is another sad and disappointing situation. In some respects, we can at least think that she lived a long life. However, unfortunately for me and my brother, we did not see her very often especially as we got older. She definitely was aware of everything we did since my mom spoke to her weekly and we also thought she had some psychic ability. It seems that she always knew about things that occurred without us saying anything! Anyway, I'm hoping for success in any appropriate fashion; if the doctors are wrong then she will feel wonderful and be able to fight through cancer! However, if the doctors are correct, then she and God will be together and she can continue to watch all of us.
Love you Grandma.
Wednesday, February 8, 2012
Family Update
Surprisingly there will now be two posts that are virtually back to back! Since I did write that blog at the crack of dawn today and finally went to bed at 3AM, I forgot to include some interesting and important items. Most of what I'm mentioning is not related to my health and current situation so I will not include many details.
My father who practically lived here for 6 months to help with the kids and the whole family, ran into another heart problem. Last December (2010) he had a triple bypass and most recently (late Jan) he had a pacemaker installed. It is so unfortunate that my family is dealing with these health issues. Both my Dad and I were very healthy before cancer and heart disease. If you subtract those terrible diseases, Dad and I are still extraordinarily healthy; my biggest issues would be asthma and ulcerative colitis. There is certainly not a clear cut explanation as to why these things are happening so we have to continue to view God as the controller. Ultimately there is a reason why these things occur, we just don't know why and might never know.
To explain another situation, my mother-in-law also lived here to help out in many respects. Fortunately she has not needed surgery; however, she has had to struggle with an excessive sinus infection during the entire living experience and currently she can not help us because she has shingles. It is upsetting that she is going through these sicknesses especially for so long.
There is no understanding as to why all of these unfortunate things are happening to me and my families. Don't read this thinking that I'm asking for help. Yes, it is wonderful to have help from our friends, but frankly this blog is intended to explain the odd experiences that we are going through. Most importantly we need to come up with mental and emotional ways of dealing with what is occurring. Like I previously mentioned, God has the control and for some reason all of this is valid and important.
My father who practically lived here for 6 months to help with the kids and the whole family, ran into another heart problem. Last December (2010) he had a triple bypass and most recently (late Jan) he had a pacemaker installed. It is so unfortunate that my family is dealing with these health issues. Both my Dad and I were very healthy before cancer and heart disease. If you subtract those terrible diseases, Dad and I are still extraordinarily healthy; my biggest issues would be asthma and ulcerative colitis. There is certainly not a clear cut explanation as to why these things are happening so we have to continue to view God as the controller. Ultimately there is a reason why these things occur, we just don't know why and might never know.
To explain another situation, my mother-in-law also lived here to help out in many respects. Fortunately she has not needed surgery; however, she has had to struggle with an excessive sinus infection during the entire living experience and currently she can not help us because she has shingles. It is upsetting that she is going through these sicknesses especially for so long.
There is no understanding as to why all of these unfortunate things are happening to me and my families. Don't read this thinking that I'm asking for help. Yes, it is wonderful to have help from our friends, but frankly this blog is intended to explain the odd experiences that we are going through. Most importantly we need to come up with mental and emotional ways of dealing with what is occurring. Like I previously mentioned, God has the control and for some reason all of this is valid and important.
Tuesday, February 7, 2012
FINALLY I'm posting again
There has been some rational reasons as to why a post hasn't occurred for a long time. I will explain the reasoning in a little while, but more importantly I need to share CAT scan results. Unfortunately (yet again), the last chemotherapy did not work. The cheekbone tumor has increased in size and it is the largest in size change. It has more pressure on the brain now because of the new size. This would probably explain the new level of pain and excess nerve attacks in that area. The stomach and the other tumors are larger; however, we are talking a 1-2 millimeter change. Chatting with Dr. S about the size changes other than the cheekbone, they are tolerable in the sense that it is a very small measurement. Even though the treatment didn't work, the tumors could have resulted in a much worse scenario.
The massive reasoning for the lack of blogs was due to blood problems. As mentioned in the first chemo-treatment (August - September) my hemoglobin values were roughly 9-ish g/dl. Of course during radiation the values got better since my body wasn't exposed to the danger of chemo; I sometimes hit up to 10 g/dl. One more recent hemoglobin value was 6.5 g/dl! WOW! This value is not good. Generally after the value of 8 g/dl a transfusion is required (kind of). It is ultimately up to the patient to decide whether they want a transfusion. Based on what I've heard some patients have perhaps even lower values and still go through chemo. After a discussion with Michael, some debate, and seeing that the next blood screen showed a value of 6.7 g/dl, a transfusion was scheduled.
What I should definitely explain is that low hemoglobin values result in severe fatigue. I had great difficultly walking from my living room to the bathroom. I needed Michael to assist just to make sure that I didn't have so much weakness that I ended up falling. I now use a wheelchair, but mostly at the doctor's office since I don't venture out anymore. Frankly, it is the safest level of transportation for me at this time. Not only was physical fatigue vastly different from my previous experiences, but I slept incessantly during the day and the night. As a result, a blog post, emails, and general communication was one of the last things to attempt (unfortunately) since eating didn't happen regularly because of the massive sleeping during the day.
I had the transfusion February 2 at the Phoenixivlle Cancer Center which is where I had the radiation done in the fall. It was a super early appointment at 7AM where my wonderful friend and neighbor, Mrs. D drove me there and then hung out with me for the full 7 hours of treatment! Interestingly, it became obvious that my blood type is "B+." I saw this on every bag, which resulted in 3 blood bags for the 7 hours of injection. Mrs. D joked and explained how that blood type is how you should be in life, which is "BE POSITIVE." I love this and of course we laughed about it. It is so important and frankly something I'm been trying to work on since all of this started! CLIMBING THE POSITIVITY LADDER!
The day after the treatment I felt so much better! I was moving around the house carefully despite the fact that I found I had less fatigue issues. Sometimes you worry that you are over sensationalizing what is happening; however, because I was able to do things physically that were issues before, I believe things were improved. I did notice the same, but perhaps a better experience the next day (the weekend), which was wonderful since I was able to interact with my kiddies. However, I mistakenly did things overboard. I didn't relax as I should so I ended up with pain, exhaustion, and a grumpy personality at the end of the day. Doesn't this happen with everyone? I won't know what the potential new value is until I start treatment up again, but at least I can physically experience improvements.
Prior to the transfusion, there was the Dr. S appointment that I mentioned above. Not only did we discuss CAT scan results, but the possibilities of treatments. I am at the point where clinical trials are valid and frankly are the only options at this point. I have signed off on a protocol and things are taking a long time. I'm not sure when I will officially start, yet I might not get clearance to join this trial. With this protocol you either get the drug by itself or the drug with another drug. I will not know what I take, but at least I get a chemo drug regardless. It is given once a week for a total of 2 injections (every 3 weeks). I will then have a CAT scan after 6 weeks - if the drug works I will continue, if not we have another clinical trial drug to start.
In general things have been emotional. From failing treatment again, to having a swift change in blood values, and waiting for the next round of chemo treatment it has generated many emotions. I don't understand why things happen and of course I get extraordinarily frustrated, but I do have the notion that there are valid reasons why these things are happening. For instance, the longer I'm out of treatment, the better my blood values. Perhaps this is quite important! Of course this is where God is controlling things. I just forget sometimes that it is He that is organizing and managing everything. Of course it is difficult to deal with and generates various emotions, but it is something I have to remember and bring up in my busy head. It is He after all that is fixing me!
The massive reasoning for the lack of blogs was due to blood problems. As mentioned in the first chemo-treatment (August - September) my hemoglobin values were roughly 9-ish g/dl. Of course during radiation the values got better since my body wasn't exposed to the danger of chemo; I sometimes hit up to 10 g/dl. One more recent hemoglobin value was 6.5 g/dl! WOW! This value is not good. Generally after the value of 8 g/dl a transfusion is required (kind of). It is ultimately up to the patient to decide whether they want a transfusion. Based on what I've heard some patients have perhaps even lower values and still go through chemo. After a discussion with Michael, some debate, and seeing that the next blood screen showed a value of 6.7 g/dl, a transfusion was scheduled.
What I should definitely explain is that low hemoglobin values result in severe fatigue. I had great difficultly walking from my living room to the bathroom. I needed Michael to assist just to make sure that I didn't have so much weakness that I ended up falling. I now use a wheelchair, but mostly at the doctor's office since I don't venture out anymore. Frankly, it is the safest level of transportation for me at this time. Not only was physical fatigue vastly different from my previous experiences, but I slept incessantly during the day and the night. As a result, a blog post, emails, and general communication was one of the last things to attempt (unfortunately) since eating didn't happen regularly because of the massive sleeping during the day.
I had the transfusion February 2 at the Phoenixivlle Cancer Center which is where I had the radiation done in the fall. It was a super early appointment at 7AM where my wonderful friend and neighbor, Mrs. D drove me there and then hung out with me for the full 7 hours of treatment! Interestingly, it became obvious that my blood type is "B+." I saw this on every bag, which resulted in 3 blood bags for the 7 hours of injection. Mrs. D joked and explained how that blood type is how you should be in life, which is "BE POSITIVE." I love this and of course we laughed about it. It is so important and frankly something I'm been trying to work on since all of this started! CLIMBING THE POSITIVITY LADDER!
The day after the treatment I felt so much better! I was moving around the house carefully despite the fact that I found I had less fatigue issues. Sometimes you worry that you are over sensationalizing what is happening; however, because I was able to do things physically that were issues before, I believe things were improved. I did notice the same, but perhaps a better experience the next day (the weekend), which was wonderful since I was able to interact with my kiddies. However, I mistakenly did things overboard. I didn't relax as I should so I ended up with pain, exhaustion, and a grumpy personality at the end of the day. Doesn't this happen with everyone? I won't know what the potential new value is until I start treatment up again, but at least I can physically experience improvements.
Prior to the transfusion, there was the Dr. S appointment that I mentioned above. Not only did we discuss CAT scan results, but the possibilities of treatments. I am at the point where clinical trials are valid and frankly are the only options at this point. I have signed off on a protocol and things are taking a long time. I'm not sure when I will officially start, yet I might not get clearance to join this trial. With this protocol you either get the drug by itself or the drug with another drug. I will not know what I take, but at least I get a chemo drug regardless. It is given once a week for a total of 2 injections (every 3 weeks). I will then have a CAT scan after 6 weeks - if the drug works I will continue, if not we have another clinical trial drug to start.
In general things have been emotional. From failing treatment again, to having a swift change in blood values, and waiting for the next round of chemo treatment it has generated many emotions. I don't understand why things happen and of course I get extraordinarily frustrated, but I do have the notion that there are valid reasons why these things are happening. For instance, the longer I'm out of treatment, the better my blood values. Perhaps this is quite important! Of course this is where God is controlling things. I just forget sometimes that it is He that is organizing and managing everything. Of course it is difficult to deal with and generates various emotions, but it is something I have to remember and bring up in my busy head. It is He after all that is fixing me!
Sunday, January 15, 2012
Nervous
I didn't mention this previously because it just became apparent that I'm nervous! I found out on Thursday that I have my CAT Scan scheduled at the end of the month. It makes me more frantic and worried about whether this current treatment is working. I'll certainly be upset if this would be another treatment that is unsuccessful! I would then have to change to a new treatment, #3, and go through the entire process again to attempt success. It is so hard to understand whether the physical experiences from the treatment mean that it works - are there new tumors or tumors that are growing OR the existing tumors are dying and nothing new exists?
After this treatment I have a high level of pain and it definitely exists in new areas like the left side of my back near the T6 position as well as the left part of the abdomen below the ribcage. What does this mean? I didn't experience this during treatment #1 that didn't work; I hardly had pain anywhere. Of course my analytical brain overwhelms the situation - I need to some how relax my thinking, but it is certainly difficult. Frankly, no one, myself, my nurse, and my doctor, would have answers until the CAT scan. nerves, nerves, nerves.
Hopefully this makes some sense especially since I'm on lots of pain drugs right now and its 12:32 AM. I need to head to bed, but I'm a little hyper because of the nerves!
After this treatment I have a high level of pain and it definitely exists in new areas like the left side of my back near the T6 position as well as the left part of the abdomen below the ribcage. What does this mean? I didn't experience this during treatment #1 that didn't work; I hardly had pain anywhere. Of course my analytical brain overwhelms the situation - I need to some how relax my thinking, but it is certainly difficult. Frankly, no one, myself, my nurse, and my doctor, would have answers until the CAT scan. nerves, nerves, nerves.
Hopefully this makes some sense especially since I'm on lots of pain drugs right now and its 12:32 AM. I need to head to bed, but I'm a little hyper because of the nerves!
Friday, January 13, 2012
Trying to fix things
My brain must be functioning a little differently these days - perhaps it might be going back to normal? Brain normalcy would be nice for some of us :-). Anyway two things I've been thinking about and trying to address 1). the level of pain has increased quite a bit with this chemo treatment and 2). I haven't been able to be physical to build up muscles and stay strong.
I had treatment yesterday so I discussed with my nurse (love her!) about the pain management. We of course had discussed Oxycontin extended release, which is different from the Percocet that I take. Percocet is a combination of Oxycontin and acetaminophen and is taken every 4 hours as needed. The Oxycontin extended release drug you take regularly every 12 hours and it works and stays in your body that entire time to deal with pain. Michael has always been concerned about this drug since it is a narcotic that is know to cause massive addiction problems. Michael and I discussed all the benefits and concerns about the Oxycontin and I'm going to start using it. The neurontin was great for the nerve pain once we figured out the dosage, so hopefully I can experience the same benefit with the Oxycontin. One issue that freaks me out is that once the Oxycontin is working in a regular fashion, it will take roughly 48 hours to work regularly, if I still have pain issues that occur I can take the Percocet! That seems very weird to me - although I have had experiences of being on Percocet and there is still massive amounts of pain. I guess I'll figure it out.
It has been a very long time since I exercised or did much of anything! It is unfortunate and despite the fact that Dr. S tells me to do whatever I want there are a lot of things my body can't do anymore. I did have my Radiation Oncologist disallow many activities that had to do with my upper back where I had radiation; I wasn't allowed to pick up many things, including Colton, or stretch like I normally do. So I discussed this with the nurses and received communication with Penn Caring Way since they have nurses and physical therapists that would come to the house. I'm mostly focused on having someone work with me knowing about the tumors and initiating exercises and stretches that are safe for my body. I'm sure that what I do currently is not appropriate so it would be great to have someone give me the right exercises so my body starts building up again!
I did have a nurse come by today to initiate the program and she already suggested an abdominal brace since that large tummy tumor is affecting the back and causing the pain. I think this program will be beneficial in many ways and it will occur weekly. I'm really hoping that I gain some strength when I hit success and health so it won't take too long afterwards to get back to normal! I do realize that even after getting health it is going to take some time to get strength, energy, and many other things, but I'm completely focused on working towards it!
I had treatment yesterday so I discussed with my nurse (love her!) about the pain management. We of course had discussed Oxycontin extended release, which is different from the Percocet that I take. Percocet is a combination of Oxycontin and acetaminophen and is taken every 4 hours as needed. The Oxycontin extended release drug you take regularly every 12 hours and it works and stays in your body that entire time to deal with pain. Michael has always been concerned about this drug since it is a narcotic that is know to cause massive addiction problems. Michael and I discussed all the benefits and concerns about the Oxycontin and I'm going to start using it. The neurontin was great for the nerve pain once we figured out the dosage, so hopefully I can experience the same benefit with the Oxycontin. One issue that freaks me out is that once the Oxycontin is working in a regular fashion, it will take roughly 48 hours to work regularly, if I still have pain issues that occur I can take the Percocet! That seems very weird to me - although I have had experiences of being on Percocet and there is still massive amounts of pain. I guess I'll figure it out.
It has been a very long time since I exercised or did much of anything! It is unfortunate and despite the fact that Dr. S tells me to do whatever I want there are a lot of things my body can't do anymore. I did have my Radiation Oncologist disallow many activities that had to do with my upper back where I had radiation; I wasn't allowed to pick up many things, including Colton, or stretch like I normally do. So I discussed this with the nurses and received communication with Penn Caring Way since they have nurses and physical therapists that would come to the house. I'm mostly focused on having someone work with me knowing about the tumors and initiating exercises and stretches that are safe for my body. I'm sure that what I do currently is not appropriate so it would be great to have someone give me the right exercises so my body starts building up again!
I did have a nurse come by today to initiate the program and she already suggested an abdominal brace since that large tummy tumor is affecting the back and causing the pain. I think this program will be beneficial in many ways and it will occur weekly. I'm really hoping that I gain some strength when I hit success and health so it won't take too long afterwards to get back to normal! I do realize that even after getting health it is going to take some time to get strength, energy, and many other things, but I'm completely focused on working towards it!
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