Archive | March 2013

Good News, Yet Conflicted

KenTinaDeepDeneDuke called to inform me that my MRI reveals that the tumor is stable. It appears to have not grown. This was expected to be the best outcome possible. Of course, tumor reduction would have been better news but that was never expected for this particular chemo, Lomustine, for me.

This is very good news! Despite my diligent adherence to avoiding sugar and alcohol, we decided it was an occassion to celebrate and raise a glass of wine.

The recommendation is to continue taking this chemo, which really just means taking a second dose for now. One dose lasts six weeks. Side effects have been fairly minimal and tolerable, including:

  • fatigue — I’ve been zapped of energy, but this could be attributable to the steroids I take (to control brain swelling);
  • low blood counts — I’ll have to continue getting frequent blood tests. I had to have a platelet transfusion during my first dose. This is not a big deal though.

So what is there to be conflicted about?

I spent the last month doing intensive research and planning for a natural healing plan (my Plan B). If the MRI revealed that I should not continue this chemo, there really isn’t another one waiting for me to try. I have pieced together an intensive treatment regimen including, diet, nutrition, juicing, supplements, meditation, yoga, kinesiology, accupuncture, ayurvedic healing, pranic healing, and a variety of other holistic treatments.

The idea behind my plan is that the human body is capable of amazing self-repair. Nurture the body, mind and spirit to optimal condition, and the body can effectively fight disease and cancer, actually destroying tumors. This sounds too good to be true. Otherwise, everyone would be healthy, right? Reading about alternative and natural healing, it’s not difficult to be convinced that many industries in our society rely on Americans to continue eating poorly, watch lots of  TV, drink soda and beer, and get fat and sick. There is lots of money to be made from the unhealthy.

I was ready to forego chemo for my custom-tailored plan because I believe: toxic chemotherapy often kills patients. I believe I’ve got the right plan as well as the tenacity, determination, passion, faith and luck to be one of the ones who survive following a natural healing plan. Tina, however, knows that I finally found something that is working for me, so carry on is the only sensible course of action.

I suppose that I have to accept that the chemo is probably responsible for stopping my tumor growth. I agree it makes sense to stick with it.

I will likely pursue my plan anyway while on the chemo although my medical doctors will likely discourage me from some pieces of it namely certain supplements, concerned that they may affect the efficacy of the chemo.

All the pictures in this post are taken on our daily walks in the woods.

All the pictures in this post were taken on our daily walks in the woods.

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Good Blood

Good news — my blood platelet count was greatly improved yesterday. I hope this means I’m out of the woods as far as needing transfusions.

Kebostock Photo Slideshow

We had a fund raising event in September 2012 which was a music fest type of thing. We called it Kebostock — a play on Woodstock and a nickname many know me by — Kebo. A good friend from college put together this photo slideshow of the occasion:

Eye ExmSeeing Clearly

My vision has always been great. I’ve never needed glasses. But over the past several months, I’ve had difficulty reading small text. So I picked up a cheap pair of drug-store reading glasses that seemed to fix the issue. In the last couple weeks though, my eyes have felt strain and caused headaches. This has been troubling because the tumor could be interfering with optic nerves.

Tina took me to an Optometrist for a proper exam. Everything seemed to look pretty good. The conclusion is that I’m just getting old and this is typical for a man in his forty’s. I really hope so — I know of people whose tumors do affect vision to the point of blindness.

Hope, Love and Friends

I want to encourage the many other  GBM patients and caregivers out there to stay strong. I’m sending out healing thoughts on your behalf.

Cindy, Kat and Joy — Tina and I send love your way. These are difficult times, but with the love, support and prayers of friends, we can carry on, heal and experience joy.

Thank you to all our friends who help us daily — you make this process much easier to deal with. We love you all.

Getting Warmed Up

Turn of the Season

This is very important to me. We finally got a warm sunny day and it lifted my spirits. Tina and I went for our daily two-mile walk through Deepdene Park without me complaining about the cold. Winter still hasn’t gone into hibernation yet, but I feel Spring is going to kick him out of here very soon.

Bench-Depdene

Latest Blood Results

My body seems to be generating platelets now. My numbers were high enough yesterday so that I did not require another transfusion. Other blood numbers hover kind of low from the chemo, but nothing to worry about.

Platelet Donation

Several people asked about donating platelets on my behalf. I asked about this and apparently it’s an antiquated idea. Certainly if you have healthy blood to donate, someone, someday could benefit from your donating so I encourage that. But as far as doing it for me, it’s not practical. As you are donating blood if you want it to be meaningful to you that it’s for me you’d have to handle it like Dallas (Matt Dillon) in the movie, The Outsiders: “Let’s do it for Kebo!”

Can’t Forget Fun

I received a donation this week from someone I don’t know with the “stipulation” that I had to spend it on something fun. What a great gesture. Thank you. Having fun needs to be part of my recovery and treatment plan. I’m certain I can figure something out!

Dinner-LawrenceDiscipline and Breaking the “Rules”

We had a gift certificate to use for a nice dinner out and used it last night. It came with a cocktail or glass of wine. Although I think it’s in my best interest to avoid drinking alcohol, I went ahead and had a glass of pinot noir with the justification that resveratrol is an antioxidant and even recommended for cancer by some sources. Tina ordered the salmon so I got the duck breast (I’m one of those that can’t order the same dish even though it was a healthier choice). And for dessert, chocolate truffle cake with vanilla ice cream. Normally I would never have all that sugar. It’s pretty easy to think, one meal of decadence isn’t going to kill me and I did enjoy it thoroughly. It felt like we were on a normal date like years ago. But going forward, I think I have to be more diligent about my self-imposed restrictions.

For the last week or so I have been been working on building a custom protocol for myself regarding nutrition. Rather than follow existing protocols like Budwig (flax and cottage cheese) or Gerson (juicing), it will incorporate concepts from these programs as well as some things I feel are right for me to contribute to Natural Healing. I’m excited to share my ideas, probably after my next MRI.

“Avoid Knives and Mosh Pits”

“Avoid knives and mosh pits,” was the advice of my oncologist’s nurse practitioner last week when she informed me  that my blood platelet count was dropping very low. Platelets prevent bleeding.

Saturday night I did have a lot of nose bleeds. I was tested again on Sunday and the platelets had dropped further. After today’s re-check I was taken immediately for a transfusion.

Decreased platelet count is an expected effect of chemo, so this is no big surprise. It is my first experience with it though.

The transfusion of donated platelets should last about three days at which point I will be tested again. Hopefully my bone marrow will start generating platelets again so that I don’t need another transfusion. Luckily, the transfusion is quick and relatively painless.

Other symptoms

I’m having some minor vision issues. I noticed while helping Tina list items to sell on eBay (mostly women’s clothes).

I don’t have significant pressure or headaches but occasionally have some curious sensations in my head.

I don’t fixate on symptoms or the tumor because I believe that “where thoughts go energy flows.” I don’t want to empower anything negative.

My muscles are weak which can also be attributed to chemo and steroids. Also, I have gotten away from a regular yoga practice. We walk quite a bit every day. Spring is almost here. By then, I expect to get back to some physical training, including yoga.

Next MRI

My next MRI is in two weeks. Then, we’ll go consult with Duke again.

Other options

Although Duke said we were running out of options, that is not entirely true. The NIH contacted us to report that I do qualify for  their super aggressive immunotherapy study.

While an aggressive, progressive or risky treatment might seem a reasonable plan of action for where I’m at now, I’m inclined to choose a natruopathic approach. That is, nourish my body, mind and energy so that it is in an optimal state to fight the tumor itself. This probably sounds ridiculous to some people and it may very well be, but their are no clear choices. This is tough.