okay, so my wife was right. This week was not just the bloodwork but rather was bloodwork, doc visit and an 'easy drug' treatment. Well, that was what it was supposed to be at least.
My blood work showed my cell counts are as expected except for creatinine. The creatinine is ... lower than acceptable. This means that my kidneys are not terribly happy and are behaving suboptimally. So the doc had to cancel my chemo for next week.
But.. he also added a hydration to today so I only got home from my 8:30 am doc appointment around 3pm. *sigh*
So next week, there is going to be blood work and that will be followed the following week with a full three session chemo session over Wednesday, Thursday, and Friday... if my creatinine levels improve.
Must force fluids even if nauseous.. must force fluids even if nauseaus.
By the way, since I have received the question from several people, I asked the doctor 'academically, without treatment, how long would I realistically have?'
His answer was "I would say 3-6 months, closer to the 6. With treatment, it is anyone's guess though"
So, that question is answered....*sigh*
Sunday, September 18, 2016
Wednesday, September 14, 2016
Blatherings from the Bilge
Sorry about the delay. Last week and this has been filled with ... queasiness and dizziness. But, as per your request, I am here to give you an update on how my last week went. Last week was my first week of chemotherapy. The people at the Willamette Valley Cancer Institute are fun, caring, interesting and on the ball when you need help or have questions.
Wednesday was my first treatment, using the 'easy' drug. This only took a couple of hours and had no true side effects other than a bit of dizziness. It was the first use of my medical port however so it was very educational. Let me tell you, the port is a lot easier to use than an IV to apply the medicines. Just a slight pinch and I was good to go. The only odd part is that when they went to unplug the port from the medicines, they flush the lines and then inject heparine. Considering it is intravenous, it leaves a 'taste' like the smell of alcohol for quite some time.
Thursday was not so good but mostly because the chemo started at 7:30am. After the last months of my body getting up when it stopped being tired, this was a shock to my system. Though, I am not certain just how much sleep I was able to get due to the anxiousness. In any case, at 0 Dark 30, I showed up, was shown to a chair and then hooked up to my drugs. And hooked up I remained until around 2pm. Rehydration and lots of drugs were given including antinausea medications. This left me a little groggy and woozy but alright, until about 30 min after getting home when I started to hiccup. and hiccup.. and hiccup.. Due to the drugs I pretty much crashed again when I got home and slept despite the hiccupping but... every time I awakened, the hiccups were still there.
On Friday, I had another session with the Institute. This time I was just supposed to get rehydrated, a process of a bag of saline in about an hour. However, my hiccups had not let up. Initially the nurses had a bit of fun with me but when I asked if there is anything that can be done, they take it to the docs. Initially the docs prescribe an oral antianxiety/relaxation pill. When that doesn't take effect after 30 min, the doc comes in to administer the shot form of the same drug. This slows down the hiccupping but it doesn't actually go away until about 40 min after I am home that night. Talk about sore ribs from hiccupping for 24 hours. *wince*
Saturday when I got up, I was rather dizzy, groggy and a bit nauseated. Throughout the day, the nausea got worse so that sitting up became questionable even with antinausea medications. Carnation Instant Breakfast for the win even into Sunday.
Tuesday I went out with Carrie, my wife, to pick up meds for our cat and I was able to eat an omelette without having too much trouble. At this point, as the docs say, whatever you can manage to eat, do.
This week is a blood test week to see how the treatment is effecting my red and white corpuscles.
They WILL bottom out due to the chemo but the question is, when and for how long. That will determine the timing of the rest of the treatments.
This week I have pretty much been dealing with nonstop nausea, which I have meds for, but the side effects of which are grogginess and sleepiness. :(
Robert
Wednesday was my first treatment, using the 'easy' drug. This only took a couple of hours and had no true side effects other than a bit of dizziness. It was the first use of my medical port however so it was very educational. Let me tell you, the port is a lot easier to use than an IV to apply the medicines. Just a slight pinch and I was good to go. The only odd part is that when they went to unplug the port from the medicines, they flush the lines and then inject heparine. Considering it is intravenous, it leaves a 'taste' like the smell of alcohol for quite some time.
Thursday was not so good but mostly because the chemo started at 7:30am. After the last months of my body getting up when it stopped being tired, this was a shock to my system. Though, I am not certain just how much sleep I was able to get due to the anxiousness. In any case, at 0 Dark 30, I showed up, was shown to a chair and then hooked up to my drugs. And hooked up I remained until around 2pm. Rehydration and lots of drugs were given including antinausea medications. This left me a little groggy and woozy but alright, until about 30 min after getting home when I started to hiccup. and hiccup.. and hiccup.. Due to the drugs I pretty much crashed again when I got home and slept despite the hiccupping but... every time I awakened, the hiccups were still there.
On Friday, I had another session with the Institute. This time I was just supposed to get rehydrated, a process of a bag of saline in about an hour. However, my hiccups had not let up. Initially the nurses had a bit of fun with me but when I asked if there is anything that can be done, they take it to the docs. Initially the docs prescribe an oral antianxiety/relaxation pill. When that doesn't take effect after 30 min, the doc comes in to administer the shot form of the same drug. This slows down the hiccupping but it doesn't actually go away until about 40 min after I am home that night. Talk about sore ribs from hiccupping for 24 hours. *wince*
Saturday when I got up, I was rather dizzy, groggy and a bit nauseated. Throughout the day, the nausea got worse so that sitting up became questionable even with antinausea medications. Carnation Instant Breakfast for the win even into Sunday.
Tuesday I went out with Carrie, my wife, to pick up meds for our cat and I was able to eat an omelette without having too much trouble. At this point, as the docs say, whatever you can manage to eat, do.
This week is a blood test week to see how the treatment is effecting my red and white corpuscles.
They WILL bottom out due to the chemo but the question is, when and for how long. That will determine the timing of the rest of the treatments.
This week I have pretty much been dealing with nonstop nausea, which I have meds for, but the side effects of which are grogginess and sleepiness. :(
Robert
Sunday, September 04, 2016
Blatherings from the Bilge
I am very sorry if my posts are being depressing or shocking or overly informative. I am trying my best to ensure that those that mean something to me hear the news of what is happening as it is occurring. I do not want them to suddenly be shocked and horrified at being left out and suddenly hearing of my condition or, even worse, only hearing after I have passed beyond the veil.
Alrighty now. So.. here is the latest update on my condition as of today:
1) stage 4 bladder cancer has been confirmed.
2) CT scans show it within my lymph nodes pretty much from my base to my neck.
3) Doc clearly has stated that chemotherapy is NOT a curative for me but may buy me additional time.
4) How long do I have? we don't know yet. That will depend on the effects of the chemotherapy upon my body and upon the cancer.
5) Chemotherapy starts this coming week. The chemotherapy determined by the doctor is GC which is actually sort of two different therapies that tend to get rolled into one. In my case, at least short term, they are going to both be used but at different times.
Basically here is what my week is going to look like:
Tuesday - see doc, get bloodwork to determine current levels of red and white blood cells
Wednesday - go in, get hydrated and get the 'easy' drug. This should take about an hour and is unlikely to have any side effects. Other than what would be expected of using a port in my chest to feed fluids into my jugular and down into my heart.
Thursday - go in really early, get antinauseau IV followed by the 'hard' drug. This should take about 5-7 hours depending on the flow rates they can achieve through my port. This is slated to start at really lame ass early and go through lunch time basically. This will have chance of resulting in nausea, vomitting, other side effects.
Friday - go in and get rehydrated since the 'hard drug' tends to dehydrate. This should only take 30-60 minutes
At the end of that, then additional appointments will be made. Depending on how I do with the easy drug, I may end up with multiple treatments of that one per hard drug treatment.. or I may end up with a longer dosage of the easy drug.
A lot of it is in the air depending on how my body responds and reacts.. and if the cancer 'works' with us.. or if it continues grabbing me by the throat and moves to the next target.. my heart and lungs.
Alrighty now. So.. here is the latest update on my condition as of today:
1) stage 4 bladder cancer has been confirmed.
2) CT scans show it within my lymph nodes pretty much from my base to my neck.
3) Doc clearly has stated that chemotherapy is NOT a curative for me but may buy me additional time.
4) How long do I have? we don't know yet. That will depend on the effects of the chemotherapy upon my body and upon the cancer.
5) Chemotherapy starts this coming week. The chemotherapy determined by the doctor is GC which is actually sort of two different therapies that tend to get rolled into one. In my case, at least short term, they are going to both be used but at different times.
Basically here is what my week is going to look like:
Tuesday - see doc, get bloodwork to determine current levels of red and white blood cells
Wednesday - go in, get hydrated and get the 'easy' drug. This should take about an hour and is unlikely to have any side effects. Other than what would be expected of using a port in my chest to feed fluids into my jugular and down into my heart.
Thursday - go in really early, get antinauseau IV followed by the 'hard' drug. This should take about 5-7 hours depending on the flow rates they can achieve through my port. This is slated to start at really lame ass early and go through lunch time basically. This will have chance of resulting in nausea, vomitting, other side effects.
Friday - go in and get rehydrated since the 'hard drug' tends to dehydrate. This should only take 30-60 minutes
At the end of that, then additional appointments will be made. Depending on how I do with the easy drug, I may end up with multiple treatments of that one per hard drug treatment.. or I may end up with a longer dosage of the easy drug.
A lot of it is in the air depending on how my body responds and reacts.. and if the cancer 'works' with us.. or if it continues grabbing me by the throat and moves to the next target.. my heart and lungs.
Tuesday, August 16, 2016
Blatherings from the Bilge
So, in my time off from work, I have been doing several things. For the most part playing MMO games just has not interested me at all. Civilization V with its really long play time and turn based play has been pretty fair though. Occassionally I will binge watch a program on NetFlix.
Currently I am working my way through the TV program West Wing. As I sit down to write this, I feel a lot like Sam or Tobey writing one of the speeches for either the President or the Press Secretary. I spend a lot of time weighing the information that I have and that I wish to pass on to others, evaluating how much to give, how it will likely effect people, the crafting of the wording. Even though I do it electronically at first to ensure that I can wrap my own mind around the subject matter and process it all, you would not believe the sheer number of drafts that can go into one of these updates. It is hard to convey how tiring the process is when the news to be relayed is so mind numbingly consuming even before I sit down to write this up for others even when the news is good.
Unfortunately, the news today is far from good.
The word from the oncologist is this : Stage 4 bladder cancer is in my lymphatic system which is almost always fatal. The main variable now is how compromised my system is and how 'energetic' the infestation. At this point, he is unwilling to estimate until there is additional imaging done and initial rounds of chemotherapy have been started to test its effects.
The oncologist is going to work with the general surgeon to place a line into my system through which chemotherapy will be able to be administered. He is scheduling PET scan of pretty much my entire system and CT scans of it as well. This will not effect the chemo much other than the intensity. Until chemo is started, he won't know how long, how much or how effective it may be. He was very willing to say to my work that he can conservatively estimate at least 3-6 months of treatment. He is also signing me up for a once a week class on chemotherapy so that I can better understand effects and set my expectations but... he was very good at relaying the impression that since the bladder cancer has literally seized me by the throat, that I shouldn't have many expectations, that it is a matter of when, not if. He was able to legitimately state that if my cancer responds to treatment that I may be able to add a few years and return to work. However, even so, again, it is a matter of when, not if.
As you can imagine, this news hit myself hard and I can only believe that it likely is hitting those of my audience hard as well. I am sorry for that effect but I believe it is better to be up front than have people hearing this information obfuscated and altered in a game of word of mouth/telephone. As the last news took me several days to process before putting on the wire, I think I am doing better, adjusting to my new 'reality', since you are seeing this information in a much more timely manner. This doesn't mean I am finding the news easier to take I assure you. It is just that this news comes as the latest onslaught and I can only be shocked so long before I go numb which is pretty much where I am at now.
Currently I am working my way through the TV program West Wing. As I sit down to write this, I feel a lot like Sam or Tobey writing one of the speeches for either the President or the Press Secretary. I spend a lot of time weighing the information that I have and that I wish to pass on to others, evaluating how much to give, how it will likely effect people, the crafting of the wording. Even though I do it electronically at first to ensure that I can wrap my own mind around the subject matter and process it all, you would not believe the sheer number of drafts that can go into one of these updates. It is hard to convey how tiring the process is when the news to be relayed is so mind numbingly consuming even before I sit down to write this up for others even when the news is good.
Unfortunately, the news today is far from good.
The word from the oncologist is this : Stage 4 bladder cancer is in my lymphatic system which is almost always fatal. The main variable now is how compromised my system is and how 'energetic' the infestation. At this point, he is unwilling to estimate until there is additional imaging done and initial rounds of chemotherapy have been started to test its effects.
The oncologist is going to work with the general surgeon to place a line into my system through which chemotherapy will be able to be administered. He is scheduling PET scan of pretty much my entire system and CT scans of it as well. This will not effect the chemo much other than the intensity. Until chemo is started, he won't know how long, how much or how effective it may be. He was very willing to say to my work that he can conservatively estimate at least 3-6 months of treatment. He is also signing me up for a once a week class on chemotherapy so that I can better understand effects and set my expectations but... he was very good at relaying the impression that since the bladder cancer has literally seized me by the throat, that I shouldn't have many expectations, that it is a matter of when, not if. He was able to legitimately state that if my cancer responds to treatment that I may be able to add a few years and return to work. However, even so, again, it is a matter of when, not if.
As you can imagine, this news hit myself hard and I can only believe that it likely is hitting those of my audience hard as well. I am sorry for that effect but I believe it is better to be up front than have people hearing this information obfuscated and altered in a game of word of mouth/telephone. As the last news took me several days to process before putting on the wire, I think I am doing better, adjusting to my new 'reality', since you are seeing this information in a much more timely manner. This doesn't mean I am finding the news easier to take I assure you. It is just that this news comes as the latest onslaught and I can only be shocked so long before I go numb which is pretty much where I am at now.
Monday, August 01, 2016
Blatherings from the Bilge
results came in today. They were finally able to decide what the mass was that they removed... a lymphnode.. with metastatic carcinoma similar to the bladder cancer.
Now I have to wait to find out next moves but...from my understandings from the doctors previously, this is pretty much the worst news we could have expected.
Now I have to wait to find out next moves but...from my understandings from the doctors previously, this is pretty much the worst news we could have expected.
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