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

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.

Heading into MRI machine (stock photo, not me)

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.

My White Blood Cell Count since starting PC-V

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.

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.