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.
Monday, September 4, 2017
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.
Tuesday, April 11, 2017
PCV round 2 complete, follow up MRI clear
I finished up round 2 of the chemo, had a follow up MRI and got cleared for round 3 of 6. All is going well with the chemo, I have become an expert with managing the side effects. The MRI was clear of any growth. There is a marble sized region left after surgery that the doctors said requires 'close observation'.
Taking time off work during this time is turning out to be a good idea. Although costly, I am well rested both physically and mentally. I have been volunteering at the local homeless shelter a few days a month to help keep me busy. I have great news on the health insurance front. My wife Holly landed a job will full benefits. Today is our 19th wedding anniversary! I am so blessed.
The Obamacare/ACA insurance plan we had was OK for the standard medication , doctor visits and MRI's, but they would have only paid 60% of the cost for the chemo. This would amount to thousands of dollars out of pocket per cycle. One last note on the chemo, the pharmacy has tried every cycle to refill the Rx right after I take it. They completely ignore the notice on the data sheets they provided and the Rx from the doctor that clearly indicate the medication is to be taken no less than 6 weeks apart and try to send me the next dose in 6 days.
I have started thinking about what I'll do after the chemo is over and the MRI's continue to be stable. I could ride the disability income till retirement, but I have two kids to get through college and some more saving for retirement to do. I also enjoy 'working'.
Next MRI after 2 more cycles in July.
Peace out,
Ed
Taking time off work during this time is turning out to be a good idea. Although costly, I am well rested both physically and mentally. I have been volunteering at the local homeless shelter a few days a month to help keep me busy. I have great news on the health insurance front. My wife Holly landed a job will full benefits. Today is our 19th wedding anniversary! I am so blessed.
 |
| Holly and I just before the last surgery |
The Obamacare/ACA insurance plan we had was OK for the standard medication , doctor visits and MRI's, but they would have only paid 60% of the cost for the chemo. This would amount to thousands of dollars out of pocket per cycle. One last note on the chemo, the pharmacy has tried every cycle to refill the Rx right after I take it. They completely ignore the notice on the data sheets they provided and the Rx from the doctor that clearly indicate the medication is to be taken no less than 6 weeks apart and try to send me the next dose in 6 days.
I have started thinking about what I'll do after the chemo is over and the MRI's continue to be stable. I could ride the disability income till retirement, but I have two kids to get through college and some more saving for retirement to do. I also enjoy 'working'.
Next MRI after 2 more cycles in July.
Peace out,
Ed
Sunday, January 29, 2017
PCV Round 1 complete, disability issues resolved.
I have been updating my last post about how am am physically handling the PCV chemotherapy to keep the details all in one place. The physical aspect went better than I expected. I did have some emotional problems. The 'possible' side effects of the drugs are quite scary, some requiring emergency care. I would get distressed on the slightest indication of symptoms. One of the possible reactions is lung failure. This is so prevalent that the doctor had me take a lung function exam with a pulmonologist before starting the chemo. The major problem I had over the cycle was exhaustion. Doing the simplest physical activity would put me back on my butt. I start taking deep breaths to regain my composure. I would then start thinking I can't get enough air - OMG are my lungs failing??? No, just freaking out. This has probably happened five times over the past three weeks along with a host of other false alarms. With this experience under my belt I expect the upcoming cycles will be less stressful.
Speaking of stress, most of the issues around my disability pay have been resolved. My application for federal social security and my private long term disability insurance have been approved. My family and I need to adjust to 60% of my regular salary, even less having to pay for medical insurance. Here I hope to get on Obama-care before Trump-neglect takes effect. I am confident that I will be able to go back to work after this chemotherapy is behind me a couple of months down the road.
Looking forward to spring.
Speaking of stress, most of the issues around my disability pay have been resolved. My application for federal social security and my private long term disability insurance have been approved. My family and I need to adjust to 60% of my regular salary, even less having to pay for medical insurance. Here I hope to get on Obama-care before Trump-neglect takes effect. I am confident that I will be able to go back to work after this chemotherapy is behind me a couple of months down the road.
Looking forward to spring.
Monday, January 9, 2017
PCV Chemotharpy - Round One.
I started the PCV chemotherapy last night. Week one is the 'C' component, followed by 2 weeks of the 'P'. Dragging today, but stomach feels OK.
Getting the chemo approved ordered and shipped though the insurance was a challenge. First thing is that the insurance co and its pharmacy do not recognize the drug names the doctor told us.
'P' doctor says is 'Procarbazine' and 'C' for 'Ceenu' The insurance pharmacy calls these two drugs "Matulane"for 'P' and "Lomustine" or "Gleostine" for the 'C'. nice. Second was that the pharmacy (BCBSIL Prime) then said that it will be need to be filled by their Specialty pharmacy, then they said "we are not licensed to dispense that drug, you will have to to a third party, "Accredo". I have my Dr send there. Several days go by and they say that they never got the Rx. Then, out of the blue, Walgreens calls me to set up for delivery. I have no idea where they got the Rx from, but they assured me that it was covered and ready to ship. Great , ship it! But wait, they only have the Rx for the 'P', no mention of 'C'. I call the doctor and have the re-send to now a third place. That worked, and I had both in hand a couple days earlier. The 'V' is intravenous, and the doctor recommended to skip that for now. Its been shown recently that the this drug does not get into the brain, and some people take it because all the research was done with the full PCV combination. not me.
I am happy with the progress of therapy with my left hand. Problems with proprioception continue.
Have a great new year,
-Ed
Update 1/13:
Wow is that Ceenu powerful stuff. I took 220mg on Sunday night and did not feel OK until Thursday night. In between was fatigue and nausea. When I was on Temador, I would take 400mg every day and not crash like that until after 3 days. The smaller amount of ceenu brought me down immediately. It caused constipation immediately, I should have started miralax the day before.
Update 1/16:
I started the Procarbizine last night. 1st of 14 200mg daily doses. Taking miralax as a precaution. Woke up with a headache, other than that feeling ok.
Update 1/24:
I have been taking the Procarbizine for about a week now. I don't have anywhere near the stomach problems I had with the temodar. I have been eating regularly, small portions throughout the day. I was feeling pretty good till Thursday last week. I took a walk and was having a hard time getting home from exhaustion.The fatigue has persisted since then. I spend a lot of time sleeping.
Update 1/29:
I took my last dose of Procarbazine last night... first cycle complete! I have been eating regularly and taking Miralax daily. The only significant problem was exhaustion. Now I get three weeks off and then start cycle two of six.
Update 8/4:
The side effects got worse as cycles progressed
Getting the chemo approved ordered and shipped though the insurance was a challenge. First thing is that the insurance co and its pharmacy do not recognize the drug names the doctor told us.
'P' doctor says is 'Procarbazine' and 'C' for 'Ceenu' The insurance pharmacy calls these two drugs "Matulane"for 'P' and "Lomustine" or "Gleostine" for the 'C'. nice. Second was that the pharmacy (BCBSIL Prime) then said that it will be need to be filled by their Specialty pharmacy, then they said "we are not licensed to dispense that drug, you will have to to a third party, "Accredo". I have my Dr send there. Several days go by and they say that they never got the Rx. Then, out of the blue, Walgreens calls me to set up for delivery. I have no idea where they got the Rx from, but they assured me that it was covered and ready to ship. Great , ship it! But wait, they only have the Rx for the 'P', no mention of 'C'. I call the doctor and have the re-send to now a third place. That worked, and I had both in hand a couple days earlier. The 'V' is intravenous, and the doctor recommended to skip that for now. Its been shown recently that the this drug does not get into the brain, and some people take it because all the research was done with the full PCV combination. not me.
I am happy with the progress of therapy with my left hand. Problems with proprioception continue.
Have a great new year,
-Ed
Update 1/13:
Wow is that Ceenu powerful stuff. I took 220mg on Sunday night and did not feel OK until Thursday night. In between was fatigue and nausea. When I was on Temador, I would take 400mg every day and not crash like that until after 3 days. The smaller amount of ceenu brought me down immediately. It caused constipation immediately, I should have started miralax the day before.
Update 1/16:
I started the Procarbizine last night. 1st of 14 200mg daily doses. Taking miralax as a precaution. Woke up with a headache, other than that feeling ok.
Update 1/24:
I have been taking the Procarbizine for about a week now. I don't have anywhere near the stomach problems I had with the temodar. I have been eating regularly, small portions throughout the day. I was feeling pretty good till Thursday last week. I took a walk and was having a hard time getting home from exhaustion.The fatigue has persisted since then. I spend a lot of time sleeping.
Update 1/29:
I took my last dose of Procarbazine last night... first cycle complete! I have been eating regularly and taking Miralax daily. The only significant problem was exhaustion. Now I get three weeks off and then start cycle two of six.
Update 8/4:
The side effects got worse as cycles progressed
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