Blogging in B Minor

Keegan is doing really good. He had a bit of an issue with jaundice for several days that we were monitoring closely but that seems to be ok at this point. We took him to the doctor just to have him checked out. Everything looks great but he had us go to the lab on Wednesday for the counts – they came back a little high so we went back again yesterday and they are stable so all is well.

Rachael is doing ok – she’s starting to get a bit of her strength back and just getting used to the new schedule. Even though we have done this before, it’s been almost five years! So, it’s kind of new again. It’s a little bit more complicated this time around too because of my condition. My seizures are subsiding, mainly because I’m getting rest and Rachael has agreed that since she needs to be up anyway to feed Keegan that I may as well sleep. How nice is that? I have to say though, I had seizures each day (small focal seizures, totally manageable) but the first night I had I slept for 6 hours or so I didn’t have one the following day. We both agreed this is worth it and I’m also trying to prepare myself for the chemo and radiation so we are making sacrafices. She is being so supportive. To compensate for what she is enduring at night, during the day I’m taking care of all the meals and handling his needs so she can sleep. On the 30th I start chemo and radiation which is really why I’m off work in addition to the surgery I had on the 29th of June anyway so we’ll see how that impacts things but all in all we are walking through it all and have a lot of support. More to come and I’ll be posting more pictures when I can.

Brain Tumor Treatment

I’ve been doing a lot of research on treatment options and have uncovered some interesting information. Of course I’m not ready to be as bold as some people have and completely buck the medical science world and forego radiation and chemotherapy – that would be foolish in my view but some people have actually done this. However, there are some natural therapies that seem to be very promising. In particular, a doctor named Dr. Johanna Budwig from Germany made some very important discoveries related to the use of flaxseed oil.

Dr. Budwig found that the blood of seriously ill cancer patients was deficient in certain important essential ingredients which included substances called phosphatides and lipoproteins, while the blood of a healthy person always contains sufficient quantities of these essential ingredients.

She found that when these natural ingredients where replaced over approximately a three month period, tumors gradually receded, weakness and anemia disappeared and life energy was restored. Symptoms of cancer, liver dysfunction and diabetes were alleviated. Dr. Budwig then discovered an all natural way for people to replace those essential ingredients their bodies so desperately needed in their daily diet. By simply eating a combination of just two natural and delicious foods not only can cancer be prevented but in case after case it was actually cured. (These two natural foods, organic flax seed oil & cottage cheese) must be eaten together to be effective since one triggers the properties of the other to be released.)

In doing more research, I found a site http://www.flaxoflife.com/ that contains the amazing story of Tom Rolland, a man who was diagnosed with a GBM and utilized this method along with some other supplements to great success. His regimen is something I am going to apply to my treatment plan and has been covered in a book I am reading that covers a range of alternative treatments, some that originate in the world of medical science and some that do not.

The point to all of this is that you have to attack this from all angles. You can’t just sit back and rely on the oncologists to prescribe radiation and chemotherapy, accept that as your treatment and hope it all works out for the best. I have a binder full of material, it’s all assembled and I’m putting my own treatment plan together. This is but one small component but I wanted to place a post online about it because it’s received so much notoriety it’s worth mentioning.

I will be starting chemo and radiation on the 30th. I’m not sure what to expect – I do have ideas but everyone is different so although I have read up I’m trying not to read “too” much into this. Some people say it’s awful, others breeze through it. I won’t know until I do it and I’m in it. I have a strategy diet-wise and have prepared myself psychologically, just as I did for the surgery, as best that I can so at this point it’s just as it has been with everything else I have had to do since this has all started – walk through it. This has all been a test of endurance but as I go through each phase of this, I get stronger and it actually does get easier to deal with. When you think about it, after being told that you have a tumor, going through months of scans, told you have to have brain biopsy, then getting these harsh second/third opinions, facing surgery with neuro deficits, having a diagnosis of brain cancer, etc. etc, there is really not much that can bother me! You could tell me just about anything and just about anything could happen in my life and it wouldn’t phase me much. Flat tire on the car? Garage catches on fire? Oh well – there are ways to take of these things. Seriously – I have to say that this has all changed my perspective and there is a part of me that does wish I could have had this perspective on life long ago but I guess we just aren’t built this way. I’ve always had gratitude and have been grateful for the blessings in my life but I just don’t think we are fully capable of realizing how fragile our lives are until we are faced with something like this. Maybe it’s just me.

More to come.

Site Search Tags: keegan, brain tumor, oligoastrocytoma, cancer, chemotherapy, radiation, brain cancer

Subscribe by Email RSS Subscription

Just an update on the personal front. The River of Faith album is out there as you know – thanks to those of you who have purchased copies – I’m glad I can share my music with you. It really means a lot to me – I hope you are enjoying the music and the genesis of the songwriting.

As you know this blog has transformed itself into a personal update forum for the foreseeable future! Frankly, it’s actually working out quite well in this capacity so I appreciate everyone who has been using this as a means to obtain the information. It saves a lot of time given everything that is going on.

Again, we cannot thank everyone enough out there for the prayers and support! We are hanging in there. Things are challenging of course but we are inspired by everyone’s thoughts and prayers, the support we are receiving and everything we are pursuing in our strategy. Rachael is doing well and getting rest. It’s a foregone conclusion now that our son will be delivered via scheduled c-section. This will be scheduled for the week of July 22nd most likely.

As for me, I have had complications in the way of focal seizures. It’s something that occurs in 1 of 3 brain tumor patients and is either a complication of surgery or could be something else as a result of the tumor itself. Time will tell. A seizure is something that should be defined because many people have only one vision in their minds. A seizure can be as mild as a marching “numbness” in your hand or wrist to something as strong as loss of muscle control and all feeling/motor function on a side of your body. Last Wednesday I had an issue with my left shoulder – I couldn’t straighten my arm out to my side and then my shoulder started becoming irritated for lack of a better term. The short of it is my entire left arm and left leg became involved and I lost control of motor function – the most frustrating thing EVER!! Mine are referred to as simple partial seizures.

I knew going into this what I could be dealing with in terms of neurological deficits, complications and potential issues. We had the doctor on the phone and tried to deal with it medicinally but after awhile but had to go to the hospital. There they could IV something called Ativan that calms everything down right away. Since then, I’ve had 2-3 “breakthrough” seizures every day – talk about frustrating. These, however, are nothing like the incident on Wednesday. My shoulder will become irritated, I will relax myself and within 30 seconds or so it will resolve. Call it learning to deal with it! I have to say though it is frustrating and it’s getting me down. I have a great Neurologist who is working with me on the Rx’s necessary to manage it. The theory is brain swelling from surgery causes it and I’m currently tapering off of steroid medication that controls brain swelling, which is important to do as well. Kind of a catch 22.

The other bit of news is I had an appointment with my Radiation Oncologist today. You know, all of it is surreal at times. Sitting in a Radiation Oncologist’s office was, well, odd. No, it’s not like a feeling of I don’t deserve this or anything like that. It’s just a feeling of how did I get here? And how sobering it is that I am sitting here and sizing up what I have to navigate. Neurologists, surgeons, oncologists, radiation specialists, chemotherapists, neuro-pathologists……and you have to know about each of these specialists, what they do, what they know about you, how they can help you, how to HELP them help you and how to arm yourself with questions and research that allow you to be an advocate for yourself. SIGH.

Anyway, this appointment was like most of them. I have never met with a radiation oncologist. He was excellent, as are all of the doctors at the Neuroscience Institute here in Sacramento. We talked about my case and I found that the final pathology is a mixed glioma – the tumor consists of both astrocyte cells and oligo cells and is called an Oligoastrocytoma and has been graded as a grade 3 in my case. It’s a malignant tumor. Aside from that, we will move forward with partial brain radiation therapy at a high dose called 60GY – this is considered both a curative and adjuvant dose. In conjuction with this, I will have a chemotherapy called Temodar which was originally found to be very effective against grade 4 GBMs but has more recently proven to be effective against this type of Grade 3 tumor and variations including mixed gliomas. This will be administered concurrently with the radiation. The goal of course is to stop growth altogether, shrink it and ultimately eliminate it along with radiation. It has happened although realistically we are praying for control and management. The meeting was good – any neurological deficits resulting from radiation that I was worried about are not a concern – we can treat this.

It’s late but we’re marching on. I won’t lie – this is hard. Really hard. Our days are filled with ups and downs. Trying to juggle this, planning for the arrival of our son, keeping our soon to be 5-year-old son Aidan active and filled up – not to mention insulating him from a lot of this, controlling the revolving door of supportive family and friends and just this crazy life we have been thrown into is not something we can keep pace with but we don’t have a choice. And frankly, much of this is what we need but it’s a lot to handle.

God is at the wheel – that’s all I can say.

Site Search Tags: brain tumor, chemotherapy, glioma, oligoastrocytoma, pathology, seizure, temodar

Subscribe by Email RSS Subscription

I wanted to post an update here even though I don’t have a lot of energy. It’s the easiest way to keep everyone up to speed instead of repeating everything over and over. I would like to thank everyone for your thoughts and prayers. It is so much appreciated. Your comments left here on my blog to posts such as this one have meant so much to me and my wife. They are uplifting and just add that much more to this situation in terms of inspiration and hope. I just want you to know that.

First off, aside from some weakness on the left side of my body, mostly in my left hand/arm, combined with headaches and some common side effects of this type of brain surgery I am doing well. Cognitively I feel on par.

Details: The intraoperative brain mapping showed that the tumor was fully involved in the primary motor cortex – not what we had believed entering the day. We had believed the secondary cortex was involved and if so, tumor resection to some extent would be possible with some deficits occurring, albeit potentially temporary. However, resecting any of this out of the M1 area (primary motor cortex – which controls all of your motor skills – left brain to right side of your body and vice versa) would result in a total, permanent deficit such as hemiplegia and we had an agreement prior to the operation that we wouldn’t play that card yet so early in the process. Therefore, we didn’t resect and that is of course disappointing because tumor resection is your first line of defense. But, you have to move on to the solution and not get mired in the problem!

On the positive, my Neurosurgical team, who did just an absolutely amazing job, spent the 4-5 hours getting there and having wide access to the area for more than that reason (resection). We were able to obtain three very good biopsy tissue samples – samples you wouldn’t obtain through standard biopsy procedures using a “burr hole” into the skull. The reason this is important is if you obtain a biopsy and have one sample and grade it, you “hope” that those cells are representative of the entire cell type makeup of the tumor. You see, you have to grade a tumor based on the highest grade cells you find. You could have cells that are grade 1, 2 and 3. You may only find one grade 3 cell, but if you do, the entire tumor has be graded as a 3. You have a much better opportunity to accurately grade the tumor by having 3 excellent samples, as we did in my case, then you do if you use the burr hole method. Ok, enough of an explanation!

Preliminarily, all of the biopsy results have come back showing this to be an anaplastic astrocytoma which is a grade III astrocytoma (a type of glioma). It’s more malignant in nature than a grade II which is considered “atypical”. Regardless of the pathological disposition, they are all treated with malignant therapies. I am now going to be heavily focused on Temedor and a package Chemotherapy called PCV that has shown amazing results in patients with this specific tumor, an anaplastic astrocytoma. Needless to say I am extremely disappointed. I will not be dwelling on it but the fact is, once it is confirmed through extensive pathology later this week, it’s grade 3 brain cancer and because we cannot resect the tumor – or we won’t at this point in time given the deficits (but that may be a decision later), I am going to have to keep it under control through other means. No, I don’t want to focus on stats and prognosis but you have to wade into that and I am starting to get into that because I have an important clinic on Thursday to discuss treatment options and like everything else, including my 2nd and 3rd opinions that drove our decision to get surgery done, I must continue driving for answers and solutions although a cure is not something that is going to be possible.

I’m having quite a lot in the way of headaches, tracking meds for post op brain swelling and pain relief, etc. but in my spare time, for 15 mins at a time or so, I’m pulling together info for a meeting I will be having at the end of the week with the entire case team at the Neuroscience Institute. These next two weeks are critical – strategy will be set and things will be set into motion and they must be right.

Rachael, Aidan and I really appreciate all of the thoughts and prayers during this time. Everyone around us has been absolutely amazing. Aidan was a little taken aback by the incision on my head when I first came home but I told him it would fade and I haven’t been allowed to shower – and somehow I convinced him it’s kind of “cool”. LOL! Rachael is doing well and that is also next on the calendar! She will be delivering, probably via c-sect as it turns out, the last week of July so I’m hopeful in gaining strength back to at least help a bit but with Chemo and so forth it’s going to be hard for a while. However, God has sent an army of supporters our way and we are so blessed.

More to come….

Site Search Tags: surgery, God, anaplastic, astrocytoma, brain tumor, chemotherapy, chemo, hemiplegia, pcv, primary motor cortex

Subscribe by Email RSS Subscription