Well I finished the proton therapy last week.It was a lot easier to handle then IMRT back in 2010 I think because of The lack of chemotherapy While doing the radiation.
So as it stands today the only therapy I am doing is the Avastin. The plan is to Continue this Until either the MRI shows that there is more progression or I cannot tolerate the Avastin. So far the advanced and side effects have been minor. Some nose bleeding and problems breathing Very similar to What I've experienced in the past. I need to keep a close eye on my blood pressure It went up a little bit last time and it is one of the major risks of this drug.
One thing that I did not cover in any previous posts was That the radiation oncologist had Told me that the last progression that was seen that took out my vision was probably because of an effect He called " Avastin rebound " that causes tumors to GROW when stopping Avastin! He badgered me for making the decision stopping it. This was not the first jerkish treatment he gave me and I have since told his office I will not be seeing him anymore.
On top of it when I talk to the Neuro oncologist about this rebound effect, he said the growth could have been from this effect, but it was far from a matter of fact. Two doctors, same hospital, two totally different messages. Nice. Next of this is the fact that eventually I am going to have to stop the avastin. Disk leaves a very dark cloud on the horizon When that day comes. Hopefully the circumstances around the future decision to stop the Avastin are much more serious than the possibility of any possible rebound effect. yeah 'hopefully'. I've had 9 Infusions so far, and the plan is for one every three weeks.
MRI coming early March. This MRI will give us an indication if the proton therapy worked and if the Avastin is working. If we see progression here It indicates that neither worked and the decision to Stop Avastin Will be forthcoming leaving a lack of any treatment... watch and wait they call it.
Friday, February 22, 2019
Tuesday, January 15, 2019
Progression continues
Here is a brief summary of the past couple years followed by some recent developments
From June to August in 2018 MRI's revealed a small spot that Grew aggressively Around the motor strip
The symptoms around this time were left side weakness, Vision problems and mild confusion
In September I started avastin and dexadron steroids
TheMRI in October looked promising -
Open in November I started having breathing and bleeding, abd cramping problems After 5 Avastin treatments.
Pin MRI in December revealed that the tumor has grown another 15%
In January I started having Vision problems causing me to run into things.
Citing the progression of symptoms while on Avastin, I stopped getting it.
In January '19, I started the proton therapy and re-started the avastin
Mid January an MRI revealed that the tumor in the vision part of my brain got 'a lot' bigger in a few weeks, and the tumor by the motor strip also progressed.
the radiation ation oncologist decided to increase the areas of the brain that were being treated to account for the larger tumors.
From June to August in 2018 MRI's revealed a small spot that Grew aggressively Around the motor strip
The symptoms around this time were left side weakness, Vision problems and mild confusion
In September I started avastin and dexadron steroids
TheMRI in October looked promising -
Open in November I started having breathing and bleeding, abd cramping problems After 5 Avastin treatments.
Pin MRI in December revealed that the tumor has grown another 15%
In January I started having Vision problems causing me to run into things.
Citing the progression of symptoms while on Avastin, I stopped getting it.
In January '19, I started the proton therapy and re-started the avastin
Mid January an MRI revealed that the tumor in the vision part of my brain got 'a lot' bigger in a few weeks, and the tumor by the motor strip also progressed.
the radiation ation oncologist decided to increase the areas of the brain that were being treated to account for the larger tumors.
Sunday, January 6, 2019
Vision loss and proton therapy started
When I reported to my radiation oncologist that I was having big problems running into things on myleft hand side; Like people standing in the supermarket, signs in the middle of an aisle You name it. He did a quick check of my peripheral vision and found that I have pretty much lost the left hand side of my peripheral vision.He then talked me into starting up the aAvastin again It has been 6 weeks since my last infusion and my mouth and nose finally stopped bleeding.I am not looking forward to Continuing this and suffering the effects of the proton therapy at the same time, but the fight continues.They also put me back on decadron a drug that I definitely do not like.I have had three of the 25 proton treatments. The treatments are not painful at all , it is very uncomfortable being strapped into that machine,andthe morning after I wake up very confused and disorientated. Lastly,I have Lost A lot of the strength in my left hand limbs Similar to what I lost after the surgery in 2016 and eventually regained through physical therapy.
Thursday, December 20, 2018
Moving forwaed with proton Therapy, Fed up with medical treatment
I had the proton mapping session last week where they make a mask that holds my head in an exact position in the proton machine. and take a cat scan to see where my tumor is relative to the machine.
its quite daunting compered to the Radiation machine I encountered back in 2010 that resembled a cat scan or MRI machine. The proton machine is huge with a cannon-looking barrel hanging from the ceiling. It felt like a huge gun was pointed at my head. No pain or anything, just creepy scary. From here, it takes a couple weeks to program the machine to position the gun and determine how to shoot protons such that they land in my tumor.The nurse called yesterday and said the first treatment will probably be in the beginning of January and each treatment will probably start between 4 ab 9 pm. that time frame is kinda of a drag because it is very inconvenient to the people giving me rides. I hate to be a burden, and this will be 5 times a week for 5 weeks.
I tell ya, I was on the edge of deciding not to do this poton therapy. I am pretty happy with the state of my current capabilities - being able to see and move around. The radiation oncologist said there will be some collateral damage in the ares around my new tumor, left body motor strip and optic nerves., but he added "I'll do much less brain damage that tumor will do left untreated." He was not willing to give an estimate on how long this treatment will hold back the advancement of the tumor.I was also concerned about the cost and and reinsurance pre-approval. the business office guaranteed that even if denied by the insurance, all I will be responsible for is the deductible and max OOP, they will eat the costs over that, but this is still several thousand dollars. Past all this, there are really no other treatment options at this point.
They also want to continue Avastin during the therapy - but I plan on refusing this. The biggest problem I have with Avastin is the mouth sores that bleed especially when I eat anything remotely crunchy. I also makes me very tired to the pint that I fell asleep while jamin' to ZZ Top yesterday.
My cognitive skills are degrading to the point that I really can't do my programming exercises on my computer. This took a lot of my day which now leaves a big void. I'm extremely bored these days.
Another factor in my trepidation deciding to do the proton is my growing disdain for the medical field. I am continuously catching mistakes. I ordered a refill of my seizure medication and was very clear what pharmacy to send it to. the pharmacy calls me up and says the insurance was denied because they are not contracted to dispense that medication. this is BS - they filled it before. I end up arguing with them to convince them that they are telling me can't be correct. very frustrating and makes me angry that everywhere I turn people can't do their job. Another bigger example is that when I first complained to my neuro-oncologist about what the Avastin was doing to me (besides not working), he said that he would reduce the dose and frequency.At the next infusion two weeks later I asked the nurse to make sure the dose had changed since last time. Guess what? NOPE.How am I to trust these people going forward? A constant source of angst.Is the proton plan the right dose? pointed at the right location? If you have read this blog from the beginning, recall the doctor got me confusec with another patient and mistakenly put me on chemotherapy for 7 months. All this makes me want to st fck it, let's just let nature take its' course. I think I would be a happier person compared to the bitter, paranoid state I am in now,.OMG typing a PIA, sny word thsf uses a key on the left hand side of the keyboard getd secrewed up. time for a nap, have a Merry Christmas and Happy New YeR!
 |
| Me strapped into the proton machine. Note I am sitting up as opposed to lying down. |
its quite daunting compered to the Radiation machine I encountered back in 2010 that resembled a cat scan or MRI machine. The proton machine is huge with a cannon-looking barrel hanging from the ceiling. It felt like a huge gun was pointed at my head. No pain or anything, just creepy scary. From here, it takes a couple weeks to program the machine to position the gun and determine how to shoot protons such that they land in my tumor.The nurse called yesterday and said the first treatment will probably be in the beginning of January and each treatment will probably start between 4 ab 9 pm. that time frame is kinda of a drag because it is very inconvenient to the people giving me rides. I hate to be a burden, and this will be 5 times a week for 5 weeks.
I tell ya, I was on the edge of deciding not to do this poton therapy. I am pretty happy with the state of my current capabilities - being able to see and move around. The radiation oncologist said there will be some collateral damage in the ares around my new tumor, left body motor strip and optic nerves., but he added "I'll do much less brain damage that tumor will do left untreated." He was not willing to give an estimate on how long this treatment will hold back the advancement of the tumor.I was also concerned about the cost and and reinsurance pre-approval. the business office guaranteed that even if denied by the insurance, all I will be responsible for is the deductible and max OOP, they will eat the costs over that, but this is still several thousand dollars. Past all this, there are really no other treatment options at this point.
They also want to continue Avastin during the therapy - but I plan on refusing this. The biggest problem I have with Avastin is the mouth sores that bleed especially when I eat anything remotely crunchy. I also makes me very tired to the pint that I fell asleep while jamin' to ZZ Top yesterday.
My cognitive skills are degrading to the point that I really can't do my programming exercises on my computer. This took a lot of my day which now leaves a big void. I'm extremely bored these days.
Another factor in my trepidation deciding to do the proton is my growing disdain for the medical field. I am continuously catching mistakes. I ordered a refill of my seizure medication and was very clear what pharmacy to send it to. the pharmacy calls me up and says the insurance was denied because they are not contracted to dispense that medication. this is BS - they filled it before. I end up arguing with them to convince them that they are telling me can't be correct. very frustrating and makes me angry that everywhere I turn people can't do their job. Another bigger example is that when I first complained to my neuro-oncologist about what the Avastin was doing to me (besides not working), he said that he would reduce the dose and frequency.At the next infusion two weeks later I asked the nurse to make sure the dose had changed since last time. Guess what? NOPE.How am I to trust these people going forward? A constant source of angst.Is the proton plan the right dose? pointed at the right location? If you have read this blog from the beginning, recall the doctor got me confusec with another patient and mistakenly put me on chemotherapy for 7 months. All this makes me want to st fck it, let's just let nature take its' course. I think I would be a happier person compared to the bitter, paranoid state I am in now,.OMG typing a PIA, sny word thsf uses a key on the left hand side of the keyboard getd secrewed up. time for a nap, have a Merry Christmas and Happy New YeR!
Saturday, December 1, 2018
Avastin not working
MRI last week has shown the tumor has grown 10-15% compared to MRI 8 weeks ago.It's smashing into the left ventricle (cavity that holds spinal fluid for the brain) . you can see the ventricle as the black areas in the pictures in a previous post:
https://edslas.blogspot.com/2018/09/recurrence-three.html
The ventricle by the new tumor now is almost smashed closed. I guess I'm kinda lucky it smashed into fluid filled cavity, smashing into brain tissue would lead to further neurological problems. Currently, my left leg is getting more week and has loss of sensation. A couple days ago while trying to change shoes, I tried to put on my new left shoe before taking off the old one and could not figure out why it would not go on. I walked away with two shoes on my left foot.
I am meeting with a radiation oncologist on Monday to talk about the possibility of proton therapy. I was told back in 2010 that this was not an option because my tumor was too big for the very precise proton therapy. Now I have a bigger tumor, it'll be interesting to hear what they have to say. I am also concerned if insurance would cover it. I've read stories of people paying for it out of pocket.
It will be an interesting couple months.
https://edslas.blogspot.com/2018/09/recurrence-three.html
The ventricle by the new tumor now is almost smashed closed. I guess I'm kinda lucky it smashed into fluid filled cavity, smashing into brain tissue would lead to further neurological problems. Currently, my left leg is getting more week and has loss of sensation. A couple days ago while trying to change shoes, I tried to put on my new left shoe before taking off the old one and could not figure out why it would not go on. I walked away with two shoes on my left foot.
I am meeting with a radiation oncologist on Monday to talk about the possibility of proton therapy. I was told back in 2010 that this was not an option because my tumor was too big for the very precise proton therapy. Now I have a bigger tumor, it'll be interesting to hear what they have to say. I am also concerned if insurance would cover it. I've read stories of people paying for it out of pocket.
It will be an interesting couple months.
Monday, November 19, 2018
Breathing Problems
Ever since I started the Avastin/Steriods a couple months ago I have experienced shortness of breath and chest pain when I take a deep breath. The deep breath pain happens even at rest, the shortness of breath after mild activity, such as getting dressed. In my typical fashion, I decided to wait and see if it goes away. Well it didn't, and oncologist said to go see my PCP.
My PCP prescribed:
Omeprazole(Prilosec) 40 mg capsule / 1x/day
a proton pump inhibitor that decreases the amount of acid produced in the stomach.
Montelukast (Singulair) 10 mg tablet / 1x/day
Montelukast is used to prevent asthma attacks and also used to prevent exercise-induced bronchospasm
He told me that if I don't feel better in three or four days to get a ultrasound of my abdomen to see if there is a buildup of fluid and a Pulmonary function test to see if my lungs are working right. He added that if I do feel better to keep taking this medication for 30 days. I'm at day two taking these meds.
On a happier note, I have not had any of those terrible leg cramps since I stopped the steroids.
I've had 5 Avistan infusions so far. Next MRI/ oncologist visit is at the end of November.
My PCP prescribed:
Omeprazole(Prilosec) 40 mg capsule / 1x/day
a proton pump inhibitor that decreases the amount of acid produced in the stomach.
Montelukast (Singulair) 10 mg tablet / 1x/day
Montelukast is used to prevent asthma attacks and also used to prevent exercise-induced bronchospasm
He told me that if I don't feel better in three or four days to get a ultrasound of my abdomen to see if there is a buildup of fluid and a Pulmonary function test to see if my lungs are working right. He added that if I do feel better to keep taking this medication for 30 days. I'm at day two taking these meds.
On a happier note, I have not had any of those terrible leg cramps since I stopped the steroids.
I've had 5 Avistan infusions so far. Next MRI/ oncologist visit is at the end of November.
Thursday, October 25, 2018
Dramatic Weight Gain
I have put on 20 lbs over the past 6 weeks! -this is the time frame I have been on Decadron and Avastin. My appetite has been out of control, and I have been eating a lot more than usual, but geese I wouldn't think one could pack 20 lbs this fast. My gut is so large that I have a real hard time bending over to put my socks on. Most of my pants don't fit anymore. My weight last year before the PC-V chemo was steady around 185. Loss of appetite and lack of exercise while on chemo for 9 months dropped me down 15 lbs to 170.I have a call into the doctor to make sure this is not a sign of a bad reaction to the medications. Tomorrow is my last day of weaning off the decadron, my appetite has receded some - hopefully I can get back to 170.
I'm still having the severe leg and hand cramps, but not as frequent. I have learned some triggers and avoid them vehemently. One trigger was the curling of my foot needed to put on shoes. Now a wiggle to get the shoe as aligned up as possible and only press strait down. The other odd thing I caught onto was the attacks would usually happen shortly after I woke up, sometimes waking me up.Now I'm careful to not get out of bed immediately and give myself a couple of minutes of gently wiggling my toes. Even with these adjustments the leg cramps are happening a couple times a week and injure my legs so bad I hobble around for days in pain. My hands cramp up a lot when I do any fine motor control like using a pen or going to pick up small objects.These are just as painful as the leg cramps, but don't last as long and have no lingering pain after they subside. The doctor did some blood tests (Calcium and Magnesium levels, I think), but they came back normal. I'll push the issue with the doctor if this continues past the Decadron and Avastin. Enjoy my mug shots 6 weeks apart.
The past week or so I have been having pressure headaches and have been generally out of it. My left eye hurts too. I came up with a catch phrase for this "out of it" state of mind..."observation mode". Its a state of mind where I can see and hear everything around me, but do not have the sense I can process,store and react to any of it. Then when people press me for a response, I don't have a grasp of what was said or what I saw and I end up saying something like "what?, I don't know what you are talking about". How often during the day I drop into this observation mode depends on how my head feels.
I'm tired of writing, so I'll sign off.
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| October '18( 190lbs) |
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| July '18 (170lbs) |
Friday, October 5, 2018
Avistan Working
I had a MRI and appointment with the oncologist this week. The MRI showed a lot less swelling and blood products around the new growth. The growth did not change in size, which is awesome news. I was gravely concerned that seeing the rate at which this came on that it would be taking half up my brain by now. The doctor attributed this improvement and stability to the Avistan. With that, we are going to wean off the decadron steroid - good grief, this makes me so hungry I literally put on 10 lbs in the past month. Eating so much makes my digestive system very uncomfortable. My poop shooter is happy with with a 2 or 3 small meals a day. I've been eating 4,5,6 times a day.
My worries have been fueled by my ongoing muscle spasms in my legs, and have recently started happening in my hands. I have such bad episodes that I could not stand/walk for a day following. The doctor sort of ruled out that these are seizures because they are happening on both sides of my body. With the tumor on the right, he would only expect these types of problems on the left. We're looking into deficiencies in my blood work to explain this. I suspect some of the problem is rooted in the extreme stress of the whole situation. I need to put some meditation into my daily routine to calm my inner self.
Going forward I'll be getting the Avistan every 2 weeks and an MRI every 8. It was discussed when we started the Avistan that there is no prescribed number of cycles similar to chemo. This will continue as long as it's "effective" in holding the growth back.
My worries have been fueled by my ongoing muscle spasms in my legs, and have recently started happening in my hands. I have such bad episodes that I could not stand/walk for a day following. The doctor sort of ruled out that these are seizures because they are happening on both sides of my body. With the tumor on the right, he would only expect these types of problems on the left. We're looking into deficiencies in my blood work to explain this. I suspect some of the problem is rooted in the extreme stress of the whole situation. I need to put some meditation into my daily routine to calm my inner self.
Going forward I'll be getting the Avistan every 2 weeks and an MRI every 8. It was discussed when we started the Avistan that there is no prescribed number of cycles similar to chemo. This will continue as long as it's "effective" in holding the growth back.
Saturday, September 15, 2018
First Avastin Infusion, problems with Leg
Had my first Avistan infusion this week. Easy breezy, no side effects during the process or in the days following. These are now scheduled for every two weeks with a MRI/NO appointment every month. I have also been taking decadron steroid for the brain swelling. This makes me hungry, I then eat too much and get indigestion.
I have been doing financial planning on how to handle the insurance money, making sure all the accounts and passwords are written down, etc. The estate planning process is complicated with all the different types of wills and trusts, then when I see it after a lawyer write it down it I have little idea that it meets my intention. The proceeds are to support Holly through her retirement. Our marriage has been the classic Breadwinner/Bacon Cook. I want to keep that commitment in which she has few worries about money.
Physically, I have been having some serious problems in my left leg. About 6 months ago I started getting charlie horses in my calf. These would be so violent I would walk gingerly for a week afterwards from the pulled muscles. Now they are triggered from the simplest foot movement. I fear pointing my toes even when doing so to put my shoes on. Sometimes it starts just out of the blue. Yesterday it spread up my leg, lasted about 10 minutes and left me with a disoriented feeling afterword for a couple hours. Not sure this relates to the tumor, but sure is suspicious.
Ready for pumpkin spice?
I have been doing financial planning on how to handle the insurance money, making sure all the accounts and passwords are written down, etc. The estate planning process is complicated with all the different types of wills and trusts, then when I see it after a lawyer write it down it I have little idea that it meets my intention. The proceeds are to support Holly through her retirement. Our marriage has been the classic Breadwinner/Bacon Cook. I want to keep that commitment in which she has few worries about money.
Physically, I have been having some serious problems in my left leg. About 6 months ago I started getting charlie horses in my calf. These would be so violent I would walk gingerly for a week afterwards from the pulled muscles. Now they are triggered from the simplest foot movement. I fear pointing my toes even when doing so to put my shoes on. Sometimes it starts just out of the blue. Yesterday it spread up my leg, lasted about 10 minutes and left me with a disoriented feeling afterword for a couple hours. Not sure this relates to the tumor, but sure is suspicious.
Ready for pumpkin spice?
Monday, September 3, 2018
Recurrence Three
Back in July, the 18th to be specific, My Contrast MRI revealed a spot my neuro-oncologist was worried about. We scheduled a follow up MRI in 6 weeks, and are shocked to see the rate and scale of the progression
This is the MRI 6 weeks later, 8/28/2018 - Spot turned into a ~1.5" blob
I'm feeling 'normal' right now and in a good mood. I had some noted physical changes about 3-4 months ago. I stopped driving because I did not feel safe because my vision was getting confused - had hard time keeping between the lines and unsure navigating traffic. Not blurry or double vision, I just lost the understanding of what I was seeing and thus distorted ability to react to it. I can read just fine, and still have been keeping my mind busy with learning new software systems. I'm almost done writing a mobile app that will send a text message to a loved one if my phone does not move in several hours, or moves excessively like what would happen in a fall or seizure.. assuming I had my phone with me. In conjunction with this my left side started having some new problems. I have a hard time making a fist with my hand. My left leg started 'giving out' while I was walking. After my last surgery it would give me this type of problem when I got up from sitting, now its happening while I am in stride. In the last couple weeks my left leg would occasionally not cooperate with walking causing me to stumble. It would fail to lift off the ground and swing forward in coordinated manner with the other leg causing me to do do a little spin with my foot stuck to the ground. No falls yet, but I catch myself on nearby counters and the like a couple times a day. A couple times over the past few weeks I would drop into a daze - that kind of feeling I get when my mind detaches from my body. Oddly, this would happen when I was eating flavorful/spicy foods. I would stop chewing and sit there with an almost blank mind for 10 sec or so, wake up and continue normally.
My family and I decided to treat this with a relatively new approach with a cancer medicine 'Avastin' as opposed to the conventional treatment of surgery/radiation/chemotherapy - which has not worked two times now in 2010 and 2016. The doctors tell me that surgery gets more risky with each one with further dangers in lack of healing and causing more deficiencies with each swipe of the scalpel. My NO has seen Avastin both reduce swelling and tumor size in cases like mine with few side effects. He added that any improvements are temporary. Stopping these episodes of re-growth is out of reach for this disease. A similar risk exists with surgery, they can't get it all, and whatever tumor is left probably spawn and grow. The doctor said that the Avastin treatments can continue as long as they are working. It's yet to be seen if the insurance will pay for it seeing that its a new brain tumor treatment approach.
I seem to be embarking on the next phase of my journey. Nobody knows where it will take me or the timeline, but rest assured I will try keep a smile on my face along the way.
-Ed
This is the MRI 6 weeks later, 8/28/2018 - Spot turned into a ~1.5" blob
I'm feeling 'normal' right now and in a good mood. I had some noted physical changes about 3-4 months ago. I stopped driving because I did not feel safe because my vision was getting confused - had hard time keeping between the lines and unsure navigating traffic. Not blurry or double vision, I just lost the understanding of what I was seeing and thus distorted ability to react to it. I can read just fine, and still have been keeping my mind busy with learning new software systems. I'm almost done writing a mobile app that will send a text message to a loved one if my phone does not move in several hours, or moves excessively like what would happen in a fall or seizure.. assuming I had my phone with me. In conjunction with this my left side started having some new problems. I have a hard time making a fist with my hand. My left leg started 'giving out' while I was walking. After my last surgery it would give me this type of problem when I got up from sitting, now its happening while I am in stride. In the last couple weeks my left leg would occasionally not cooperate with walking causing me to stumble. It would fail to lift off the ground and swing forward in coordinated manner with the other leg causing me to do do a little spin with my foot stuck to the ground. No falls yet, but I catch myself on nearby counters and the like a couple times a day. A couple times over the past few weeks I would drop into a daze - that kind of feeling I get when my mind detaches from my body. Oddly, this would happen when I was eating flavorful/spicy foods. I would stop chewing and sit there with an almost blank mind for 10 sec or so, wake up and continue normally.
My family and I decided to treat this with a relatively new approach with a cancer medicine 'Avastin' as opposed to the conventional treatment of surgery/radiation/chemotherapy - which has not worked two times now in 2010 and 2016. The doctors tell me that surgery gets more risky with each one with further dangers in lack of healing and causing more deficiencies with each swipe of the scalpel. My NO has seen Avastin both reduce swelling and tumor size in cases like mine with few side effects. He added that any improvements are temporary. Stopping these episodes of re-growth is out of reach for this disease. A similar risk exists with surgery, they can't get it all, and whatever tumor is left probably spawn and grow. The doctor said that the Avastin treatments can continue as long as they are working. It's yet to be seen if the insurance will pay for it seeing that its a new brain tumor treatment approach.
I seem to be embarking on the next phase of my journey. Nobody knows where it will take me or the timeline, but rest assured I will try keep a smile on my face along the way.
-Ed
Sunday, June 10, 2018
New Normal
Greetings,
My last MRI in April was 'unremarkable', which is a good thing in radiologist-speak. I find it interesting that these every 3 months serial readings are usually only compared to the last MRI. Both times I had a re-occurrence The radiologist said, well we went back a year and there were remarkable changes... The images are so much different after the surgery it is difficult to compare earlier than that. So far, so good. Don't ask, don't tell and everyone is happy.
My blood counts are still low. My oncologist suggested that my immune system may have been permanently damaged, but I am not getting sick (infections) - so no need to worry. Well I did any way and had a battery of tests done to make sure that there was not some other explanation for the low counts and my general daily exhaustion. Nothing turned up, so I'm accepting that this is my 'new normal'. Don't Worry, Be Happy.
For the most part I have been feeling pretty good. I still get these major spells where I can't operate for days. During these spells, my left eye socket feels as if is missing, the inside of my head feels as if it is warping or being twisted. I can't comprehend reading material - I can read the words, but can't grasp what the sequence of them means. I am aware that this is happening and will usually spend most of the day in bed. Laying there, my body feels as if detaches from my mind. Its an odd state where if I want to move, like say roll over, I don't know how because I'm not aware of my body. No muscles to tell what to do. I can eventually talk myself into bringing the awareness back so I can get up. Again, these are spells. They last a couple days, then I am back to my new Normal. The thought of one day getting stuck in this state is very frightening and saddening. I teared up yesterday thinking about this as I just came off a spell.
I have still been keeping my mind busy with investigation into new (to me) technology in software. I probably spend too much time doing this mental exercise, but I can't just sit idle - that's not in my DNA. I guess I am also still holding on to a thread of hope I will be able to go back to work someday. My physical exercise is coming from cooking, cleaning and some yard work. I need to do something more substantial.
Next MRI in July after my 51st Birthday. Come November, this will be 8 years living/fighting with this Brain Tumor.
Have a nice Summer,
Ed
My last MRI in April was 'unremarkable', which is a good thing in radiologist-speak. I find it interesting that these every 3 months serial readings are usually only compared to the last MRI. Both times I had a re-occurrence The radiologist said, well we went back a year and there were remarkable changes... The images are so much different after the surgery it is difficult to compare earlier than that. So far, so good. Don't ask, don't tell and everyone is happy.
My blood counts are still low. My oncologist suggested that my immune system may have been permanently damaged, but I am not getting sick (infections) - so no need to worry. Well I did any way and had a battery of tests done to make sure that there was not some other explanation for the low counts and my general daily exhaustion. Nothing turned up, so I'm accepting that this is my 'new normal'. Don't Worry, Be Happy.
For the most part I have been feeling pretty good. I still get these major spells where I can't operate for days. During these spells, my left eye socket feels as if is missing, the inside of my head feels as if it is warping or being twisted. I can't comprehend reading material - I can read the words, but can't grasp what the sequence of them means. I am aware that this is happening and will usually spend most of the day in bed. Laying there, my body feels as if detaches from my mind. Its an odd state where if I want to move, like say roll over, I don't know how because I'm not aware of my body. No muscles to tell what to do. I can eventually talk myself into bringing the awareness back so I can get up. Again, these are spells. They last a couple days, then I am back to my new Normal. The thought of one day getting stuck in this state is very frightening and saddening. I teared up yesterday thinking about this as I just came off a spell.
I have still been keeping my mind busy with investigation into new (to me) technology in software. I probably spend too much time doing this mental exercise, but I can't just sit idle - that's not in my DNA. I guess I am also still holding on to a thread of hope I will be able to go back to work someday. My physical exercise is coming from cooking, cleaning and some yard work. I need to do something more substantial.
Next MRI in July after my 51st Birthday. Come November, this will be 8 years living/fighting with this Brain Tumor.
Have a nice Summer,
Ed
Monday, January 15, 2018
MRI Stable, Slow recovery continues
Hello All,
Thanks for caring.
Last post I said that I was looking forward to snow crunching under me feet - bam - got six inches in my driveway this morning.
I had a MRI and Oncologist visit this week. First the excitement in the MRI! Let me set the stage. I have had over 30 MRI's, none of them this eventful. For a brain MRI, your head is locked into place with a 'detector cage' before you are slid into the tight confines of the tube.
My MRI's have two parts, one with contrast/Dye and the other without. I spend about 20 minutes in the tube, they slide me out, give me a contrast injection, slide me back in for the last 20 minutes....usually anyhow. Last week, as I was sliding back into the machine with the dye in my veins, and the tech was walking back to the control room, I got EXTREMELY nauseous. OMG i'm gonna barf all over the inside of this machine! The technician runs back in, slides me out, takes off the cage and I sit up. The tech gives me this little change-holder size cup to hurl into. This is not going to be big enough I say. Luckily, after about 30 seconds the nausea passed and I was ready for the second half of the test. I lay back down and as the flustered tech snaps the cage back over my head, the skin on my shoulder gets pinched in the seam of the cage. Screaming bloody murder ensues. Whats's wrong? Whats wrong? they shout. Of course the cage is jammed and they couldn't get it off for what seemed to be an hour. They let me have a lollipop on my out 😊
This last couple of weeks has been tormenting. My White Blood Cell count (WBC fights off infection) has not recovered to the normal range. After consulting with webMD.com om low WBC causes, I was/am convinced that my spleen failed. I'm really good at taking every last sensation in my body and mapping it to spleen failure symptoms. I have body aches, exhaustion, no appetite, and my wright is not recovering.
The Doctor assured me that the chemo is causing this and we need to wait 'a little more time' to give my body a chance to recover. He said that I look great considering what I have been through and not to worry. OK, i'll try. Great news is that the MRI is stable.
Next MRI in three months.
Thanks for caring.
Last post I said that I was looking forward to snow crunching under me feet - bam - got six inches in my driveway this morning.
I had a MRI and Oncologist visit this week. First the excitement in the MRI! Let me set the stage. I have had over 30 MRI's, none of them this eventful. For a brain MRI, your head is locked into place with a 'detector cage' before you are slid into the tight confines of the tube.
 |
| Heading into MRI machine (stock photo, not me) |
This last couple of weeks has been tormenting. My White Blood Cell count (WBC fights off infection) has not recovered to the normal range. After consulting with webMD.com om low WBC causes, I was/am convinced that my spleen failed. I'm really good at taking every last sensation in my body and mapping it to spleen failure symptoms. I have body aches, exhaustion, no appetite, and my wright is not recovering.
 |
| My White Blood Cell Count since starting PC-V |
Next MRI in three months.
Saturday, December 2, 2017
Honesty and lack of it.
One of the most important life advice my late mother blessed me with is Honesty. She would often say, "I don't care what you do, just be honest about it!". This has served me well for the majority of my life. Honesty eliminates the stress of having to keep track of who you told what lies and the embarrassment when you get caught in one. Honesty gives me joy in that I prevented someones sorrow when I return their lost valuables. Most importantly, I feel my honesty makes me a better person, it makes me proud to be me. In a roundabout way, "I don't care what you do, just be honest about it" keeps one from doing bad things to start with. Pretty sneaky Mom.
Am I honest about everything? No. Most popular for me is the case of deception by omission, aka secrets. Secret indulgences. Secret disdain for others. Secret opinions. Some times there is no harm in holding back such realities, sometimes it's downright insulting, sometimes harmful, sometimes embarrassing. Honesty is often not the best policy, but better described as a guiding approach to managing my life.
So whats my view of honesty got to do with this blog? Well, I can't be honest in all I write or more often what I hide by omission. I often struggle internally when making these blog entries because I am not being 100% honest. I occasionally reveal too much and catch flack. I always am editing my thoughts as to what is the most PC. This leads me to the problem of understanding the point in writing this blog about my cancer journey if I cannot be 100% honest. This blog is not fiction. This is not an essay intended wholly to inspire others. It is intended to be a documentation of the facts, both practical and emotional. I often go back and read past posts to remind me where I have been, but unfortunately what I omit is forever lost and unaddressed. I have considered starting a second, anonymous blog where I can express the true reality of my journey. Know that this version of the blog is not the whole story. It's composed of what I can relate to keep others informed and inspired without being insulting, harmful, or embarrassing. Each of these drawbacks are nebulous, having different meanings for different people. I can't comprehend all the possible ways my words will be interpreted. If I fall short in this aspiration, please forgive me as I put a lot of thought behind the balance of honesty and reality.
Thanks for understanding,
-Ed
Saturday, November 18, 2017
Lingering Chemo effects, living in the thunderdome
Hello all,
Its been 6 weeks since I finished Chemo and I am still feeling the effects. The last blood test I had showed some improvements, but the counts were still at all-time lows. The doctor was happy to see the improvement and to get tested again in a month. I am glad they are not worried - but I sure am. I continue to have flashback bouts of exhaustion where I 'sleep' for days, its not really sleep, but this uncanny state where my mind is totally awake, but my body is asleep. It's a trapped feeling, and might be a dream state.
Speaking of worry, oddly enough I seem to be more worried and paranoid than I have been through this whole journey. At the last oncologist appointment, the doctor pointed out something quite notable. He said that I am DONE with conventional treatment, bar immunotherapy. I have had the lifetime limit for chemotherapy and radiation. This takes me back to the beginning when the oncologists and made me sign a legal document that I acknowledge that both the chemo and radiation side effects are other cancers, most notably leukemia. One of the symptoms of leukemia? Low blood counts. Downright scary.
I also feel abandoned by the medial community. It's like when I was diagnosed I entered a long hallway of medical treatments. Each doorway another treatment. When I got to the end of the hallway, the last door shut behind me and now I am standing in nomads land fearing the attack of the brain cancer returning and other looming cancers. Envision living in the thunderdome with Mad Max, but rather than being chased by a bunch of sword wielding freaks in dilapidated armored trucks, I am being chased by silent cancers with nowhere to run and hide, and nothing to fight them off. Every time I experience brain tumor symptoms; limb weakness, visual disturbances, stabbing pain, etc., it's like seeing one of those trucks coming in the distance to attack me. I have only hope that they won't make it till tomorrow.
I don't dwell on these fears, they live in the back of my mind only peeking out occasionally. I have a smile on my face every day and hope in my heart, consciously taking note of the joys in life. Enjoy your food. Chase your dreams. Hug your family. Embrace nature. Do it today, don't wait for tomorrow.
Happy Holidays and Merry Christmas,
Ed
Its been 6 weeks since I finished Chemo and I am still feeling the effects. The last blood test I had showed some improvements, but the counts were still at all-time lows. The doctor was happy to see the improvement and to get tested again in a month. I am glad they are not worried - but I sure am. I continue to have flashback bouts of exhaustion where I 'sleep' for days, its not really sleep, but this uncanny state where my mind is totally awake, but my body is asleep. It's a trapped feeling, and might be a dream state.
Speaking of worry, oddly enough I seem to be more worried and paranoid than I have been through this whole journey. At the last oncologist appointment, the doctor pointed out something quite notable. He said that I am DONE with conventional treatment, bar immunotherapy. I have had the lifetime limit for chemotherapy and radiation. This takes me back to the beginning when the oncologists and made me sign a legal document that I acknowledge that both the chemo and radiation side effects are other cancers, most notably leukemia. One of the symptoms of leukemia? Low blood counts. Downright scary.
I also feel abandoned by the medial community. It's like when I was diagnosed I entered a long hallway of medical treatments. Each doorway another treatment. When I got to the end of the hallway, the last door shut behind me and now I am standing in nomads land fearing the attack of the brain cancer returning and other looming cancers. Envision living in the thunderdome with Mad Max, but rather than being chased by a bunch of sword wielding freaks in dilapidated armored trucks, I am being chased by silent cancers with nowhere to run and hide, and nothing to fight them off. Every time I experience brain tumor symptoms; limb weakness, visual disturbances, stabbing pain, etc., it's like seeing one of those trucks coming in the distance to attack me. I have only hope that they won't make it till tomorrow.
I don't dwell on these fears, they live in the back of my mind only peeking out occasionally. I have a smile on my face every day and hope in my heart, consciously taking note of the joys in life. Enjoy your food. Chase your dreams. Hug your family. Embrace nature. Do it today, don't wait for tomorrow.
Happy Holidays and Merry Christmas,
Ed
Monday, October 16, 2017
done with chemo, FOR GOOD
Hello All,
I had a MRI and Oncologist visit last week. MRI was stable. Blood counts are a little low again, but I an sure they will bounce back. Biggest news is that I am done with Chemo, for good! I have reached the lifetime limit for this nasty treatment. I asked what happens next if I have further problems. Immunotherapy he says. Uncharacteristically, I did not do any research into what this is relating to brain tumors. At this point I am soo done with treatment, I want to take a break from thinking about it.
I am slowly recovering from the chemo. I have lost about 30 pounds in the last 9 months. My appetite and energy are getting better, I finished a sandwich for the first time in 9 months last night and my mid-day naps are down to about 1 hour.
MRI's will be every 3 months, next one in January.
Looking forward to the snow chrunching under my feet :)
-Ed
Update 10/23
2 weeks after I finished the chemo, my Platelets and WBC plummeted to news lows. Totally unexpected and scary. Dr said to get blood work again in one week. He doesn't seemed too worried.
I had a MRI and Oncologist visit last week. MRI was stable. Blood counts are a little low again, but I an sure they will bounce back. Biggest news is that I am done with Chemo, for good! I have reached the lifetime limit for this nasty treatment. I asked what happens next if I have further problems. Immunotherapy he says. Uncharacteristically, I did not do any research into what this is relating to brain tumors. At this point I am soo done with treatment, I want to take a break from thinking about it.
I am slowly recovering from the chemo. I have lost about 30 pounds in the last 9 months. My appetite and energy are getting better, I finished a sandwich for the first time in 9 months last night and my mid-day naps are down to about 1 hour.
MRI's will be every 3 months, next one in January.
Looking forward to the snow chrunching under my feet :)
-Ed
Update 10/23
2 weeks after I finished the chemo, my Platelets and WBC plummeted to news lows. Totally unexpected and scary. Dr said to get blood work again in one week. He doesn't seemed too worried.
Monday, September 18, 2017
Last round of PCV started, missing work?
Hello all,
After a 2 week delay, my blood counts recovered and I started the last round of chemo. This last couple weeks have been horribly stressful, I soo want to be done with this.In an effort to start cleansing my body of all these chemicals, I stopped taking one of the prescribed sleep aids, amitriptyline. There was a possible interaction with the procarbazine chemo, so I would go for two weeks without it anyway, so now its stopped. The Dr. said I could quit it any time. I also stopped taking zantac for stomach acid. I was taking this daily for years, without it I would usually wake in the night and have to walk downstairs in my undies and take some tums. I'll take it If I have something I know will disagree, like a beef sammy with peppers, but not everyday. That leaves me with the anti-seizure lamotrogine and Xanax. It will be a while, if ever that I can get off these. Enough technical details already.
This early retirement not going back to work concept is hard to swallow. My self-worth has taken a hit in the gut. I find myself looking down at me feet and looking back thinking, that was it? That was my career? I aimed too low at the onset and met my career goal when I was like 25. After that, I started seeing what engineering management looked like beyond that and was not really interested going there. I has aspirations of starting my own business, but what the business should 'do' eluded me. I did take a stab at one time, but that fizzled out. I ended up doing about the same work for 20+ years. If I ever get back to work, I am going to do it with a much different perspective.
But there is a silver lining,
Its very clear to to me now what they say about how one will ever look back on their life and be remembered for what they did at work. On the contrary, with all the time I have with the family now, what I missed while doing those 60 hour work-weeks is staggering. The awareness I have now about what each family member is feeling and dealing with is enlightening. I am feeling that I spent most of my life running down a dark hall, occasionally pausing to peer through a door to 'see' my family. I essentially visited with my family, never taking the time for feel with them. Now one kid is off at college, another a junior. I had to keep the money coming, had to keep health insurance, had to be a key player at work for job security, had to get that project done on time. I do not think I was born with much ability to emotionally connect with people. I can write a book about all the relationships I screwed up. Work provided a convenient way to suppress this shortfall in my personality. Not surprisingly, 20 years suppression did not make me a better person, but this last year surrounded by my family has.
Next MRI is mid-October. I'll be done with chemo by then, and should be back to the watch and wait with a MRI every 4 months.
Fall is my favorite season, get out enjoy it.
-Ed
Monday, September 4, 2017
Last chemo cycle delayed
Hello all,
I found out on Friday at the oncologist's office that my last chemo cycle had to be delayed. One of my blood count readings, platelets, had fallen too low. Its supposed to be 140 - 400, and the results over each cycle have gone from 199 down to 72 today. The reading has not gone UP over this time, I wonder how long its is going to take for my body to recover to get the last cycle started. Holding off the next cycle was mixed news for me. On one hand, I have been feeling so horrible that I was dreading starting another cycle. Each cycle has gotten progressively worse. The 3-week 'off time' in the cycle is no longer a relief, I now feel miserable every day. On the other hand, I wanted to get this over with.
One twinkle in this dark cloud of chemotherapy is that I lost over 20 pounds since I started in December. I am almost back at my weight from high school. I did not loose any weight when I was on the Temodar chemo for 19 months, but consider I was also working full time. Unfortunately none of my clothes fit anymore. My pants are usually hanging off my ass, but I think this is in style these days.
I also talked with the social worker at the cancer center about the possibility of going back to work. She cautioned against this idea sighting that she sees a lot of men in my position push to get back to work because they are trying to get back to their 'normal life'. She says 'Normal life' has changed after the cancer progressed. There is a reason why social security deems this a permanent disability. The disease almost always continues to progress, putting me right back where I am today with more surgery and treatment. She says to enjoy life, nobody ever looks back and wishes they worked more.
This perspective was a breath of fresh air as it lifted a lot of worries about going back to work. I have shown that I can muddle through some technical tasks, but I find myself dazed and confused a lot. My son pointed out the other day that I was scaring him when I could not figure out a problem he was showing me from school. I was not confused trying to solve the problem, rather just trying to understand what the problem was. Several unspoken instances like this have occurred, all adding to my doubt that I would be able to perform in the professional world. It seems that I cannot keep things strait anymore, not only in the sense of is that picture hanging strait, but logically keeping and being able to use associations in my head. After I spoke to the social worker, I spoke briefly with the APN at the oncologist office. She said that they would consider me disabled from here on out. So for now I am going to stop worrying about going back to work and concentrate on my health and happiness.
While I was talking to the APN about my constant state 'misery', she suggested that I try taking 2mg of Decadron in the morning. I'll give this a shot, but frankly, I am sick of chasing problems with drugs. One of my face book cancer group friends has a blog, Brain new beginning, where she describes doing a detox. Sounds like a good idea to me.
My next MRI is in October, I'll update you then.
I found out on Friday at the oncologist's office that my last chemo cycle had to be delayed. One of my blood count readings, platelets, had fallen too low. Its supposed to be 140 - 400, and the results over each cycle have gone from 199 down to 72 today. The reading has not gone UP over this time, I wonder how long its is going to take for my body to recover to get the last cycle started. Holding off the next cycle was mixed news for me. On one hand, I have been feeling so horrible that I was dreading starting another cycle. Each cycle has gotten progressively worse. The 3-week 'off time' in the cycle is no longer a relief, I now feel miserable every day. On the other hand, I wanted to get this over with.
One twinkle in this dark cloud of chemotherapy is that I lost over 20 pounds since I started in December. I am almost back at my weight from high school. I did not loose any weight when I was on the Temodar chemo for 19 months, but consider I was also working full time. Unfortunately none of my clothes fit anymore. My pants are usually hanging off my ass, but I think this is in style these days.
I also talked with the social worker at the cancer center about the possibility of going back to work. She cautioned against this idea sighting that she sees a lot of men in my position push to get back to work because they are trying to get back to their 'normal life'. She says 'Normal life' has changed after the cancer progressed. There is a reason why social security deems this a permanent disability. The disease almost always continues to progress, putting me right back where I am today with more surgery and treatment. She says to enjoy life, nobody ever looks back and wishes they worked more.
This perspective was a breath of fresh air as it lifted a lot of worries about going back to work. I have shown that I can muddle through some technical tasks, but I find myself dazed and confused a lot. My son pointed out the other day that I was scaring him when I could not figure out a problem he was showing me from school. I was not confused trying to solve the problem, rather just trying to understand what the problem was. Several unspoken instances like this have occurred, all adding to my doubt that I would be able to perform in the professional world. It seems that I cannot keep things strait anymore, not only in the sense of is that picture hanging strait, but logically keeping and being able to use associations in my head. After I spoke to the social worker, I spoke briefly with the APN at the oncologist office. She said that they would consider me disabled from here on out. So for now I am going to stop worrying about going back to work and concentrate on my health and happiness.
While I was talking to the APN about my constant state 'misery', she suggested that I try taking 2mg of Decadron in the morning. I'll give this a shot, but frankly, I am sick of chasing problems with drugs. One of my face book cancer group friends has a blog, Brain new beginning, where she describes doing a detox. Sounds like a good idea to me.
My next MRI is in October, I'll update you then.
Friday, August 4, 2017
PVC Chemo effects are accumulating each cycle.
This chemo is getting rough. My first cycle (see this) was a breeze, the third cycle a developed a serious rash. Now on the the 5th of 6 cycles, the side effects which were pretty mild at the beginning are getting progressively worse. No more rash, but I felt so terrible yesterday I skipped my dose. My self-preservation instinct kept me from taking those pills. I hope to march on, but am really dreading it. My anxiety is through the roof.
I stopped volunteering at the shelter, I do not have enough energy. In its place, I completed an online certificate course in machine learning. I could only work an hour or so a day, after that I tend to get confused and cannot keep things strait in my head. It is pretty interesting to me that the advanced mathematics I studied in college 20+ years ago is now called 'artificial intelligence'. This technology has existed for decades, and the advancement of computer horsepower has made it possible to predict what you will order at McDonald's using mathematics. I'm such a dork.
Good news is that my last MRI was stable. Interestingly the last surgery's resection cavity has collapsed - now I only have one hole in my brain. The cavity from the first surgery in 2010 has not changed. The dime-sized area that we have been watching closely is stable.
Hope you are having a nice summer.
-Ed
I stopped volunteering at the shelter, I do not have enough energy. In its place, I completed an online certificate course in machine learning. I could only work an hour or so a day, after that I tend to get confused and cannot keep things strait in my head. It is pretty interesting to me that the advanced mathematics I studied in college 20+ years ago is now called 'artificial intelligence'. This technology has existed for decades, and the advancement of computer horsepower has made it possible to predict what you will order at McDonald's using mathematics. I'm such a dork.
Good news is that my last MRI was stable. Interestingly the last surgery's resection cavity has collapsed - now I only have one hole in my brain. The cavity from the first surgery in 2010 has not changed. The dime-sized area that we have been watching closely is stable.
Hope you are having a nice summer.
-Ed
Monday, June 19, 2017
Turning 50 next month, some reflection on my life
I just realized that after posting in this blog for the past 7+ years that I really never introduced my self. One of the main reasons I started this blog was to give my friends an family have a place to get the latest state of affairs. Since then, this blog has seen over 70 thousand visitors. I only know about 25 people, so, ugh, Hi my name is Ed. I grew up in the South suburbs of Chicago and still live in the area. I have a Beautiful wife and two teenage children. I graduated from UIC with an engineering degree in degree in 1991 and have worked in that field since. Interests include technology, music, handyman work, hiking and camping. I'll be turning 50, the big five-oh, next month.
Now let me get on to my blog post about how I feel about getting old with cancer.
I'm am not just an engineer by training, I was born an engineer. Searching for knowledge and understanding is in my blood. I am a very pragmatic person as opposed to being spiritual. I was raised Catholic, but I am not the church-going type. I do lead a christian life, believing in and exercising the teachings in the bible. I have intentionally kept religion out of this blog. My intention is to detail the pragmatic facts and emotions of my brain tumor journey. I do not discount the power of faith and religion, it's just not how I philosophically approach life. I lead a christian life because I believe it is an exceptional program that leads to eternal happiness, not because God is going to punish me if I don't. Eternal you say?
Now approaching 50, and considering my condition, I am closer than most 50 year olds to finding out exactly what eternity is. There is a lot of talk in the bible about Heaven and Hell. Eternal happiness or suffering. Will I make the cut? I suspect this question drives a lot of pragmatic people like me back to church as they age. Cramming for the final exam, perhaps.
I have always been more concerned with living with my conscience than passing the final. There will come a time when no more actions can clear your conscience, after which you will have to live with yourself and your thoughts. This can be Heaven or Hell in your last years depending on how you ran your life. I think the keys to eternal happiness can be boiled down to a few guiding principals:
Now let me get on to my blog post about how I feel about getting old with cancer.
I'm am not just an engineer by training, I was born an engineer. Searching for knowledge and understanding is in my blood. I am a very pragmatic person as opposed to being spiritual. I was raised Catholic, but I am not the church-going type. I do lead a christian life, believing in and exercising the teachings in the bible. I have intentionally kept religion out of this blog. My intention is to detail the pragmatic facts and emotions of my brain tumor journey. I do not discount the power of faith and religion, it's just not how I philosophically approach life. I lead a christian life because I believe it is an exceptional program that leads to eternal happiness, not because God is going to punish me if I don't. Eternal you say?
Now approaching 50, and considering my condition, I am closer than most 50 year olds to finding out exactly what eternity is. There is a lot of talk in the bible about Heaven and Hell. Eternal happiness or suffering. Will I make the cut? I suspect this question drives a lot of pragmatic people like me back to church as they age. Cramming for the final exam, perhaps.
I have always been more concerned with living with my conscience than passing the final. There will come a time when no more actions can clear your conscience, after which you will have to live with yourself and your thoughts. This can be Heaven or Hell in your last years depending on how you ran your life. I think the keys to eternal happiness can be boiled down to a few guiding principals:
- Be Honest
- Be Generous
- Be Grateful
- Exercise Compassion over Hate
These words are much bigger than they look. Please take a moment and read through them again and reflect on what they mean to you. Also think about what is not on the list that many people associate with happiness. These fast-burning aspirations are fruitless in the long run. Sermon over. Looking back on my life, I think I have a decent job following this guidance. I don't worry about running out of time. I look forward to enjoying the rest of my life.
Tuesday, May 9, 2017
Problem with PCV - Rash
I am now into the third PCV chemo cycle and have run into a problem. One week into the Procarbazine leg of the third cycle, I woke up in the middle of the night with an intense itching feeling from my knees down to me feet. Knowing that a rash was a side effect, I took a couple benadryl and tried to get back to sleep. I woke up the next morning seemingly OK, but by that evening I had a rash over a large portion of my body. The picture is one of about 6 areas of my body. (Sorry Chad). The doctor said to stop the Procarbazine for a couple days, go see my PCP to make sure the rash was not caused by something else and call back. My PCP also noted that there is a decrease in kidney function. I'm not sure where we will go from here, perhaps cut down on the dose. I'll update this post when I find out what is going to happen.
Update 5/13:
My PCP confirmed that the rash was because of the chemo and sent me back to the oncologist. The oncologist said to continue taking the chemo and treat the rash with Benidril/Claratin. They also prescribed a steroid in case my mouth starts to swell up potentially causing breathing problems. Looks like this is something I will have to live with. Interestingly, when I posted this to the Facebook brain tumor groups, several people said this happened to them on Temador, the chemo drug I was on for 19 months - this never happened to me then. I think my body is probably getting sick and tired of being attacked with chemo.
Update 5/17
Taking a Benadril at night and a Claritin in the morning kept the itching and rash at bay. Oddly, I did for get both of these a couple days later and had no problems.
 |
| Not my sexiest day |
My PCP confirmed that the rash was because of the chemo and sent me back to the oncologist. The oncologist said to continue taking the chemo and treat the rash with Benidril/Claratin. They also prescribed a steroid in case my mouth starts to swell up potentially causing breathing problems. Looks like this is something I will have to live with. Interestingly, when I posted this to the Facebook brain tumor groups, several people said this happened to them on Temador, the chemo drug I was on for 19 months - this never happened to me then. I think my body is probably getting sick and tired of being attacked with chemo.
Update 5/17
Taking a Benadril at night and a Claritin in the morning kept the itching and rash at bay. Oddly, I did for get both of these a couple days later and had no problems.
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