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

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

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.

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

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.

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

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:

• 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.

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.

Not my sexiest day

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.

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.

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

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. 

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

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Update 1/13:

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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.

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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.

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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.

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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.

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Update 8/4:
The side effects got worse as cycles progressed