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.
Friday, October 5, 2018
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
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