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.

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!

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.

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.

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.

October '18( 190lbs)

July '18 (170lbs)

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.

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?

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

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.