Blogging in B Minor

Well!, we made the move to palliative care beginning this week so visiitiing is limited and will be coordinated w/my wife. If you know Rachael just call or Email. I will have other contact info here soon.

Medically, I’m very comfortable!! I had a seizure abd apparatently the left side of my body was as firm as a board – a seizure, Enjoying family and friends!!

Her’s to life!!!

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Beginning last Thursday, I started experiencing flu-like symptoms. I did the best I could to get myself on my feet again io until last night (Sunday) but ended up going to Sutter Roseville Medical Center and was admitted. After being unable to ingest oral meds, let alone the limited food and fluid intake, this was the right call. Among other concerns I had was my inability to keep down oral anti-convulsants and the risk of seizures.

I was finally in a room at midnight. The good news – CT scan appears stable!! I would have ordered an MRI because there are no other comparison CT scans but it gave us a sufficient look.

My aim is suppotive care here. This is likely a virus. So, hydration, get food back into my system, meds back on-boardand basically get the car running again are all part of the plan

More to come. This will come to pass. Have to solve the ptoblem

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Our 2 year old son Keegan had his second set of tubes put into his ears this morning.  If any of you have ever had your children go through the tube surgery, it’s rough when they come out of it – confused, sleepy, etc.  He did fine and is at home.  We set him with an Elmo video and he was a happy boy.  We’re hoping this is the last surgery!

I have another vaccination tomorrow.  I’m so thankful that we were able to make 3 years worth of vaccine from the tumor tissue and white blood cells taken back in October and January respectively.  So far so good.

I am still struggling with seizures.  Recently they have become slightly stronger and longer in duration – at least 5 minutes and it concerns me.  I might be pushing too hard – not sure.  Actually it’s a combination of several factors.  Sometimes it’s easy to find myself wanting to tackle so much .  I’m used to making long lists and blowing through them.  I think when I let everything in – combining my profession with my medical needs – appointments, a mix of meds to keep straight and track, treatment options, and most importantly my family and time with my kids can just get to be overwhelming sometimes and I’m in that place today – at least at the moment.   I’ve spent the better part of the last week trying to sort this out with my neurologist and neuro-oncologist.

We’ve increased doses, lowered some, added a med, etc.  I’ve run into some vision issues after changing some so we’ve made other changes and the seizures start again – every few days perhaps.  It’s a matter of finding a balance but it’s a fine line.  What complicates the seizure control is I have been told that because of the location of my tumore (on the motor strip), seizures are likely to increase in frequency/severity post-gamma knife up to about 6 months.  I can only chase the problem to a point but it’s hard to get out in front of them.  I don’t want to go on decadron or any other steriod to reduce swelling because I’d have to stop treatment at that point.

More to come – this to me is really a small issue in spite of dedicating a post to it!  The good news is the tumor was stable as of the last MRI – and I just need to stay in today as I always say.  Sometimes the frustration boils over this morning was one of those mornings.

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As I wrote earlier, I had a seizure on Saturday, March 14th.  My doctors indicated it was likely a coincidence.  I wasn’t so sure but I received sound advice from Sutter, as always, that I should discuss my medication levels with my Neurologist because she was concerned – my seizures will likely increase as I move forward in time.  I called on Monday and have an appointment this next Monday.

In all of the hoopla regarding the vaccine, I didn’t mention that I had another seizure on Tuesday – about the same severity.  This one was at work – but at least I was in my office and not attending a meeting.  Of course I’m concerned about this occurring and I’m concerned about not being able to work because of this.  It’s frustrating.  I got through it though and went home and was able to reach my Neurologist and we came up with a plan to increase Keppra incrementally over several days.  So far that is holding.  Seizure control is a fine balance and not an exact science as I have learned first-hand from my Neurologist.  He is very good at what he does, as is everyone that has been treating me.  I have truly been blessed.  I am taking three different meds to control this and he adjusted all of them up/down at some point during my treatment.

We knew this would happen but not this soon.  I haven’t spoken to my Neurosurgeon but I am curious whether she still thinks this is coincidental or not – I haven’t had seizures like this until now – post Gamma Knife.  So, we’ll see.  For now, things are ok!  It’s really just part of the process here.  I have been told they will increase but we will be praying that they don’t.  I feel comfortable that we have been proactive to deal with it at the advice of my Neurosurgeon and if I do have issues, there will be more adjustments.

On the treatment front, my Neuro-Oncologist is really in a waiting pattern with treatments such as Avastin purely due to the Gamma Knife surgery.  Anyone has to wait 4 weeks to allow healing before resuming chemo or chemo-like treatment.  So I’m doing the best I can.  Yesterday was a good day – I had some good strength after work and threw the ball around with Aidan in the backyard which was great and then made a cardboard butterfly with his photo on it that he then decorated for school.  It was good for us.

More to come

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I went to my GP and based on everything we believe I have bronchitis or pneumonia.  Who would have thought?  NO idea about the headaches.  My blood pressure has been fine so that’s still a mystery at this point given the MRA was fine. 

To address the bronchitis I started a regimen of Zithromax on Thursday and have been down and out since then but slowly feeling better.  Today is actually the best day I’ve had in a long while and I’ll say I’m at 50% or so.   I made a decision that I just can’t keep getting up and going to work – I had to take some time to let my body rest so I took Friday, today and may also take tomorrow.  I just always keep going as I did during radiation and after my second surgery – I was back at work six weeks post-op.  I can’t keep doing it though.  My body is telling me to slow down so that’s what I’m doing.  I guess I’m stubborn – it took thinking and feeling the effects of a recurring grade 4 tumor, headaches, bronchitis and the aftermath of having a wisdom tooth extracted on top of trying to continue working for me to admit that I had to slow down!  So, some time off is good.

I have an appointment with my Neuro-Oncologist on Wednesday morning and we will determine the course of action which should be an Avastin infusion – WEDNESDAY.  I have to get back on treatment.  The clock is ticking and time is not my friend.  I am taking Valcyte but I need to be doing more – a lot more.  Also, the vaccine is there but we are working through very frustrating red tape.  Hopefully that is finished soon.

That’s it for now.  Thank you so much for all the prayers.  Everyone has been so supportive.  I think I just hit a streak of multiple issues here. 

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